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.

Lyme Kills II

I wrote yesterday that I would share what I wrote in the chamber. Here it is.

Lyme Disease Kills. It dashes hopes and dreams of the innocent. When I graduated from High School, I had great expectations that college would open up an entire new world for me to be someone different. Then, it happened. A few weeks prior to commencing college a radioactive tick bit me. Okay Okay, there was no radioactivity, but soon my body and mind came to a crashing halt. Lyme killed my ambition, my love for a phenomenal novel and my quiet nature. Lyme Disease kills.

Ironically, I was someone different in college. I was hurt and angry and sick. And no one would listen. Okay Okay, some listened, but they weren't the ones that could do anything about it. In fact, they could do nothing except for clean the blood from my head when I ran into something yet again, remind me to breathe after a seizure, hold my hair back while I vomited or hold my soda for me while I tried to sip. Sometimes, they held a straw in my mouth and dropped bits of soda into my mouth. I felt, at times, a bit like a bird -- helpless and wounded. There were times when I was so weak, I couldn't eat. Not being able to eat made me weaker. It was a vicious cycle. Lyme Disease kills.

In the end, I had to fight for myself. I had to fight for what was rightfully mine - the right to an education - Advisers were against me. Professors were against me. Doctors were against me. People I didn't even know well were against me. Here I am again. Fighting for myself. Fighting for an education. If I didn't fight for myself, who would? There are a whole slew of folks that would fight for me, but no one fights better for me than me.

I will admit that I am in a whole lot better place now than I was so many years ago. I have several people at the school that are working for me and I haven't met the professor yet, but if she's anything like the EDU adviser -- she'll be in my corner too. They know nothing about Lyme. They don't know I have health problems. I debate whether to mention it. I also have a phenomenal doctor on my side, a husband on my side, my family on my side and friends. Fantastic friends. Friends that know when I need a hug or a simple I love you.

Lyme may kill. Lyme may have killed my ambition, my hopes and my dreams before, but it will not kill me now. I will push through this. I will get through this again.


------
As a post note: I got registered today for the classes I want to take in the spring. I'm so excited and can't wait to see how my brain holds up during the spring semester. My biggest concern is the timing. It's from 6pm to 8:50pm. I typically can't stay awake after 8pm. Even if my eyes are open, my brain is generally down. So pray that my brain and body will stay awake at one night a week from January until May. When I was taking classes in 2002, I got a 4.0. This was 5 years before my diagnosis. Here I am 4 1/2 years after diagnosis and we'll see if I can continue this 4.0 trend.

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.

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.

Welcome to Living the Lyme Life

Welcome to everyone who has found their way to my blog. I started this journal in September of 2008. I had already been in Lyme treatment for 18 months. I wish I had begun it earlier. The name of my blog would have likely been Living a Symptom filled with no actual diagnosis Life. What a mouth full.

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. Though since my diagnosis in 2007, I've dabbled in mineral deficiency, progesterone defiency, heavy metal toxicity and other health issues. I had a PICC line inserted into my right arm in July of 2008. I battled with it every day until February 2009. 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 IV wasn't used to ABX therapies. It was used for vitamins, minerals and other supplemental therapies such as Chelation. I used an extremely experiemental IV protocol for about 9 months, but it is no longer available. I rarely talk about it because it's so controversial and it's no longer available. I'm angry about that however because I feel like that IV did more for me in 9 months than anything else I tried.

I try to live my life the best I can. Currently, I'm doing well. I use LDN Cream to keep my immune system functioning the best it can. Lyme ruled my life for a while, but I'm just a woman trying to live my life the best I can with the skills that I have and the love I receive. My husband and I got married in April 2000. He's my rock. Up until recently (when my brain actually started working), he went with me to almost every single doctor appointment. He supports me with his quirky sense of humor and selfless determination to get to the root of my health issues. Google was his best friend when I was having so many issues and we couldn't find answers in 2006. He found my LLMD and he helped me fill out all the paperwork to see him.

We have two dogs that we rescued a long time ago. One is a lab mix that we adopted from the SPCA when he was about 8 months old. We also rescued a Dachshund from a house. 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. Although I used to work full time in a preschool classroom, it became difficult to continue to do so. So for a while I taught 3 & 4 year olds how to read outside of the classroom in small groups. A lot of the children I have taught in the past are now in Academically Gifted programs. It makes me so proud to know that they took the basics I taught them and expanded into very gifted students. I just recently saw one of my students that I taught at 3 and 4 and she's now in 4th grade. Last year, I worked iwth another lady that help my same position. Because I am very loved in the classroom, I released all my students to her and began floating around in the preschool rooms. Though I am capable in younger classrooms as well, my passion is those preschool students.

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.

Lyme Symptoms in the past

So there is this website that most Lymies know of called: canlyme.com. It lists about 75 symptoms of Lyme Disease. I thought I would share with all of you the symptoms that I have had starting in 1995 when I got my initial tick bite. Some of these didn't start until 2005 when I got a second known tick bite. Yes, this is a long post. So sorry, but this is a long illness. I'm sure there are things I've left out. Also, there are things that I haven't told very many people.

• Tick Bite: I saw the tick bite.
  

• Rash at the site of the bite. I don't know if there was a rash for the first tick bite, but other tick bites, there were rashes including the EM rash that is commonly recognized as the Lyme Rash.

• Rashes on other parts of your body. I had rashes (and sometimes still do) all over my body. Sometimes it was on my legs, arms, trunk, face.
  

• Raised Rash, disappearing and recurring. Yes my rashes would pop up and some of them would be raised. They would disappear as quickly as they came on.
  

• Rash, basically circular, oval and spreading out. I had this as well. These rashes were more after the 2005 tick bite.

• Headaches - mile or severe. My headaches were tremendous. They were so significant that my GP ordered an MRI to check for tumors.
  

• Seizures - about 2 weeks after my tick bite in 1995, I started having seizures. Some were shown on EEGs and some were not. The doctors suggested that they were psychosomatic. I never believed that for a moment. They completely ended a few weeks into Lyme treatment.

• Twitching of facial or other muscles. My legs and arms twitched all the time. Most weren't noticeable to people, but at the peak of my illness my husband could feel them if he were holding my hand.
  

• Tingling of nose, tip of tongue, cheek or facial flushing. For a while, I blushed easily. I also had tingling all over. Nose, tongue, cheek, legs, etc.
  

• Stiff or painful neck. I would wake and my neck would be so stiff that I couldn't turn my head. If I did turn my neck, it would be very painful. Most of the time, it would go away after about 2 hours of being awake. It made for a difficult drive b.c I leave for work about 40 minutes after I wake.
  

• Jaw Pain.
  

• Sore throat, Clearing throat a lot, phlegm, hoarseness, runny nose. I often times would wake with a sore throat and runny nose. It was not uncommon for me to get laryngitis. For no reason, I would wake up without being able to speak. I also would have what I called "clogged throat."
  

• Double or blurry vision. at the beginning of my treatment in 2007, I had extremely blurry vision. Because I do wear glasses, it freaked me out. I sought help and my eye doctor was a little bit Lyme literate. She told me that b.c Lyme affects muscles that my muscles were being affected by the bacteria. She thought that with treatment that the blurriness would improve. She was right.
  

• Increased Floaters. Oh My Word. There was one point where the floaters were so bad that I didn't want to be out in the sun at all b.c they were so distracting. Some looked just like the spiral bacteria too. I was very freaky. Again, they improved significantly with treatment.

• Pain in eyes, or swelling around eyes. I often would have swollen lids around my eyes. I'd wake up and they would be swollen. Sometimes it would happen in the middle of the day. It still happens. I attribute it to allergies, but who knows. It could actually be Lyme.

• Sensitivity to Light. For a while, it hurt to even be inside with the lights on. I would sometimes wear my sunglasses inside. I still have to have complete darkness to sleep. Otherwise I wouldn't get any sleep at all.

• Plugged Ears. Sometimes I have moments where I can't hear. It feels as if I have cotton in my ears.

• Buzzing or ringing in ears. There was a point where it was so bad that I wasn't sure if there wasn't something really buzzing in the room. I would have to ask others if they "heard that noise." Once I answered the telephone because I thought the phone was ringing. It was my ears.
  

• Oversensitivity to noise. I couldn't go in a crowded room b.c it was so loud and it caused the headaches to increase 10 fold.

• Diarrhea. I would get cases of having to wake up in the middle of the night b.c this was so bad. It generally only happened between 1am to 4am.

• Bladder: UTI's were often.

• Upset stomach. I would wake up in the middle of the night and run to the bathroom. It would be coming out of both ends. There would be no rhyme or reason for it.

• Bone, Joint Pain, Swelling. My bones and joints ached all the time. My knees, ankles and knuckles would swell.

• Stiffness of joints, back, neck. It's self explanatory.

• Muscle pain or cramps. Almost every single muscle ached.

• Once I started treatment, I had serious trouble catching my breath. It hurt to take a deep breath and I didn't feel like I was getting enough oxygen. It wasn't the case, but it felt that way.

• Chest pain or Rib soreness. My ribs hurt constantly. It sometimes felt as if I had broken them.

• Night Sweats, unexplained chills. The nights I would wake up running to the bathroom, I would be in a cold sweat. I'd be freezing cold and burning up all at the same time. No Fever, but my clothes would be covered with sweat.

• Heart: Sometimes my heart would race or feel like it would skip a beat or two.
  

• Tremors, unexplained shaking: My hands would shake sometimes so hard that I couldn't hold a cup a water without spilling. This was the hardest symptom to "hide."

• Fatigue, Weakness. I felt completely exhausted. Sometimes so bad that I would fall asleep at stop lights.

• Numbness, tingling, pinpricks in body. Sometimes it was so bad that I couldn't feel something that was vibrating. You know those bouncy seats that vibrate? Well I couldn't tell if it vibrating by touching it. I had to listen for the noise. Imagine my shock when I felt it for the first time with my hand. I often felt as if my body was asleep. You know that annoying sensation when you sit in one place too long. Yeah ... I felt like that a lot.

• Poor Balance, Dizziness, Difficulty walking. I often fell. It was embarrassing. Sometimes my dizziness was so bad that I crawled.

• Increased motion sickness. Well I've had this since I was a kid, so I'm not sure whether it was increased or not, but motion sickness during treatment was horrible.
  

• Lightheadedness. I often felt faint when I stood up.
  

• Mood swings: I went through a phase where my mood would dip with the blink of an eye. I was frustrated a lot of the time.

• Unusual depression. Not a pretty topic, but I spent a lot of years depressed. Because of this, I was on antidepressants for a few years. Of course, my doctor thought that my depression was causing my symptoms. Turns out my symptoms were causing my depression. :O

• Disorientation, I got lost all the time. I got lost going home from work, a place I worked at for a number of years.

• Over-emotional reactions. I would cry at the drop of a hat. No reason. It was insane

• Too much sleep. there was a time in which I could sleep 12 to 15 hours, wake for an hour or two and then go back to sleep easily for another 8 hours.

• Difficult falling asleep: in the same breath, some nights were very difficult to fall asleep.

• Narcolepsy. While never officially diagnosed, I did fall asleep quite easily - not always in the bed. In fact, once I fell asleep while talking to the nurse at the front desk of a medical office.

• Panic attacks. Back in 2001, I had serious panic attacks. So much so that I took medication for them. Because I was terrified of addiction, I rarely took them ... but dealt with the anxiety through breathing techniques.

• Memory Loss: Sometimes I would forget days at a time. I think I still have lost memory from the past. Once a friend came to visit me from Virginia. A few weeks later, I mentioned I hadn't seen him in a year. I honestly didn't remember his entire visit. I still don't.

• Confusion: My words get jumbled sometimes.

• Difficulty reading: This was the most troubling problem. I loved to read. I mean, I used to get in trouble in elementary school for reading! So when I brought home a book from the library and struggled to read a page, I cried.

• Going to the wrong place. I once drove to my old place of employment. FOUR YEARS after I quit. I didn't realize I was in the wrong place until I got into the class and the kids didn't know who I was.

• Slow, Stammering speech. Sometimes I would get told "just spit it out already." What those people didn't know was that I was speaking as fast as my brain would let me. It was so frustrating and I couldn't explain that Lyme was causing my brain/speech to be so slow.

• Forgetting how to perform simple tasks. I once forgot how to use the washing machine.

• Phantom smells. Sometimes I would smell foods that hadn't been cooked. Most of the time I smelled Popcorn.

• Unexplained weight loss. I lost quite a bit of weight. I think I got down in the 70's. No reason for it. It took a while for me to get back into the 90's. Now I'm in the triple digits. No one jumped bigger than my doctor when we tipped the scales. :)

• Swollen lymph nodes. Occasionally my lymph nodes in my neck would swell.

• Unexplained "fever" My temp stayed way too low. 96.8 would have been high for me.

• Continual infections: I almost always had some sort of sinus infection.

• Symptoms seem to change, come and go. One day I'd have pain, the next day it would be cognitive problems. I'd make a doctor's appointment for one problem and when I'd arrive that one would be gone and another one would be in its place.

• Pain migrates: Sometimes my right knee would hurt and other times my left elbow. It moved around quite often.

• Flu like symptoms. I don't remember having the "flu" after my 95 tickbite, but I did get it after my 2005 tickbite.

• Allergies Chemical sensitivities, I can not tolerate "smells" of any kind. Makes me sick to my stomach.

Living the REMISSION Lyme Life

Yesterday was my wonderful Lyme appointment. I say wonderful because one thing didn't happen. There was no Grab & Jab. That happens July 29th. I say wonderful because of something I read after I left his office.

So at each visit, I go into the waiting room. I sign a piece of paper that says I'm there, what time I arrive and whether I want treatment or not. It's just a cover all our behinds kind of thing. When I'm there for a follow up, I have to fill out another piece of paper that asks what specific improvements or problems I've had since my last visit. Also have to say what specific issues I want addressed and any medications to be listed. I'm taken back for my temp, weight, blood pressure (sitting and standing) and pulse Ox. These are typically all good. Though I did have problems with my temp for a while (being way too low .. and occasionally too high) and my weight was significantly too low, but we've worked out both of those issues. I'm brought back to the waiting room while I read a new set of policies just put in effect and wait for my hero to peer his head through the door.

I was sure to get a smile on his face because while he'd never admit it out loud, I know I'm one of his favorite people. After all, he took me to congress and our picture was in some journal together (though I did never see it). We sat together to see our first viewing of Under Our Skin. So a warm smile from him when he thinks about how far I've come in four plus years is very much expected.

He opens the door and peers his head. Before he could even get my name out, I've bolted out of my seat. We walk back to his most comfortable office where I proceed to tell him that I forgot my cheerleading outfit (which doesn't fit anymore ... :( but symbolic b.c I am his biggest cheer leader) and he kindly reminds me that I used to be the person that always came in dressed crazily. I knew he meant that he could always count on me for a laugh.

We sat down and I haven't been in since December. So he wanted to recount how I've been. I tell him first how well things have gone. I've only been on antibiotics once for Bronchitis since our last visit and those went well. Then, I had to mention the symptoms. I mean I was there to tell him about my symptoms. Well I chart ALL of my symptoms in this calender on google. The problem was that my printer wasn't working and my husband wasn't home to fix it. So I had to rely on the good ole memory banks. That's hard to do sometimes, but I knew the few problems I wanted to discuss.

I told him about the few headaches I've had (which I'm sporting one right now actually). I told him about the problem sleeping sometimes where I wake up from a vivid dream and struggle getting back to sleep. And then there are some nights where I sleep very little. Now those of you that really know me know that in days past I could sleep 12 hours without waking once and at the end of the 12 hours honestly I could wake up about an hour and go back to sleep no problems. I talked about my staring into space and not really being there and spacing out moments. There was one other too private thing (which really isn't that private, but I just don't feel like discussing it on the blog) that I discussed with him.

He dug through my chart and reminded me of some serious symptoms I had in the past. We smiled b.c I had gotten through them. We discussed LDN at length. Discussing that it could possibly be the cause of some of my symptoms, but more likely than not it was something else causing the problem. We discussed how in the past my Progesterone levels were low and this could cause every single one of my problems. So on the 29th, I'll go and have those checked out. We discussed some mineral deficiencies. I've had problems in the past (and probably still have problems). These medicines make me feel so extremely nauseated. So I tend not to take them. So we're working on solutions for that.

We discussed our mutual fear of Lyme creeping back or getting a new infection over every little small symptom. Though I told him I try not to let that anxiety rule my life as it did two years ago. I told him I was in the paper. Oh did you not know? Google News of Orange: Or better yet. It won't be up long b.c they change it weekly, but a picture of Whitney & I were on the front page of News of Orange.

Here is the photo:




http://www.aconews.com/content/current/noc/front/front.pdf

Anyways, in the article you will read what it says under it:

"Both women suffer from Lyme disease, though Allton has already completed her treatment and is almost entirely in remission while Corn is just starting her antibiotic series. Before she could start, Corn had to build up her strength by taking supplements.
Erin Wiltgen / News of Orange"

I wanted to share this with you because ... it's official.

All indications are that Lyme remains in remission potentially even eradicated (though concerns remain that it could return or I could get a new infection). Dr. P said all of this based on my clinical symptoms just as he diagnosed me clinically. However, once my blood work is done and comes back (which should be back by the middle of August) we will know for certain that my symptoms remaining are hormonal in nature and not from Lyme.

Can you see me jumping for joy? I'm THRILLED.

Something old

So while the husband was going through the closet, he found something old of mine.

It was from June 27, 2006. Now keep in mind I wasn't officially diagnosed until March of 2007. It was a list of symptoms of Lyme Disease. I had circled in green the ones that I had. Here they are:

1. Rash at site of bite
2. Rash on other parts of body
3. Rash basically circular and spreading out
4. Rash that disappeared and recurred.
5. Headache (mild to severe)
6. Pressure in Head
7. Twitching of other muscles (legs & arms)
8. Tingling of nose, cheek and facial flushing
9. Stiff Neck
10. Sore throat, clearing throat a lot, excess phlegm, hoarseness and runny nose
11. Eye lids felt funny
12. Oversensitivity to light
13. Decreased hearing in ears
14. Buzzing in ears
15. Pain in ears and over sensitivity to sounds
16. Ringing in ears
17. Diarrhea
18. Upset stomach (nausea and pain)
19. Bone Pain, joint pain, swelling
20. Stiffness of joints, and neck
21. Muscle pain and cramps
22. Shortness of breath and coughing
23. Night Sweats, unexplained chills
24. unexplained shaking
25. burning sensation in the body
26. excess fatigue
27. Numbness in the body, tingling, pinpricks
28. Poor balance, dizziness, difficulty walking
29. Increased motion sickness
30. Lightheadedness, wooziness.
31. Mood Swings
32. Getting or feeling lost
33. Over-emotional reactions
34. Too much sleep and at times Insomnia
35. Difficulty falling to sleep and or staying asleep
36. Anxiety over symptoms
37. Short term memory loss
38. confusion, difficulty thinking
39. going to the wrong places
40. changing symptoms, come & go
41. pain migrating from one part to another
42. felt flu like symptom after bite
43. increase chemical sensitivity


Those were the symptoms I had felt the 6 months prior to printing the list off. There were symptoms I had that I didn't check off that I *know* I had well into the mid 90's. There were also symptoms that I didn't check off (rather list here) because they were too personal.

Also there are symptoms on the paper that I got AFTER I checked the list.

June of 2006 is when I started really researching the possibility of Chronic Lyme. It took almost a year for my husband to convince me to go see a specialist. I wonder how quickly I would have gotten better if I had just gone in June of 2006 instead of March of 2007.

I LOVE that I have only three of those symptoms ... and none of them at the same time!

Headache (very rarely - but today I have one), Buzzing/ringing in my ears (occasionally) and sometimes fatigue.

Yeah me!

Living the Lyme Life

I want to welcome any newcomers to my blog by reposting something I post every so often. I know I struggle when I come across a blog that is a year plus old to find the most important and relevant posts. So I've compiled a list of the most relevant posts that relate to my health. Whenever I write a new post, I add it to this list. You will find "this" post over on the right side under the category, "Living the Lyme Life" right under a list of music. You can go over there at any time and click on it will bring up a post very similiar to this one. If you're here and you have or think you have Lyme Disease, I hope you will find my journey helpful. Please feel free to comment and introduce yourself. If you care to have correspondance with me, please ensure to leave your email address so that I can contact you. This comment with your email address will be deleted as soon as I read it in order to protect your account. :o) Without further ado:

Also, I have posted quite a few things in the past week or so. If you haven't been to the blog lately, scroll down after you read this and see my introduction as well as the photos from my fair trip.


**Updated** October 10, 2009***

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

My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Live Blood Cell first visit
Grey's PICC Line Story
Slow Progress
My LLMD appt
November 15, 2008 Update
Chelation Challenge
Mercury Toxicity (My Mercury test came back negative)
Living the Lyme Life Post
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results
Ups and down of Lyme
Live Blood Cell of Rob & Me
Previous Photos of me
Small Victories
Curious Lymies Goes to the Doc
OCD about ticks
The Serenity Prayer
August 8, 2009 Update
Supplement Strategy
August 30, 2009 Update (Rob & Jennifer)
Starting LDN
Explaining LDN
October 10, 2009 Update

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

Follow up 10/10/09

August was my worst month this year. It was absolutely horrendous. I compare it to months that I had in 2008. I had exhaustion, headaches, word finding problems, memory problems, joint pain in hands & legs, balance issues, nausea and twitches in my legs. These problems lasted about 2 weeks of the month, but they were the worst two weeks I've had this year.

September gave me exhaustion, poor stamina, joint pain and swelling. I also had unexplained histamine reactions resulting in swollen eye lids. October has proven to be tough with the bout of Bronchitis. I walk into my LLMD's office with knowledge.

The good news is that each bad spell I had ended on it's own. I fought back with my "strong" immune system and the symptoms disappeared (excluding the Bronchitis). In August, we ran a bunch of urine and blood tests. I received the results of these tests today and what they mean for my treatment.

My sodium level is borderline low again. This means I have to add sodium into my diet yet again. My iron is better than he expected, but was still borderline low. My vitamin D is extremely low. Zinc was also overtly low. In the urine testing, it showed that I have low glutathione, and low B6. I also had a nutrient test done. The three things that were overtly low were Zinc, Magnesium and Selenium. It also showed borderline low levels of B12, inositol, Vitamin A, Copper, Chromium, Vitamin E and Vitamin C (which is absolutely astounding considering how many Grams of Vitamin C I take in a day).

He would provide me with "good news" to be followed by the "bad news." "Well, your metal test was within normal range." (YEAH) "Your Zinc levels are overtly low." (BOOO)

You may ask why are so many minerals defiecent. I can answer this. EDTA (not only to help with metals, but also to help with biofilms) not only binds to metals, but it binds to minerals. Therefore depleting my mineral supply. We were aware of this problem prior to the blood test and I was given Trace Minerals. However, Trace Minerals make me so nauseated that I can't take them. So he's going to give me specific minerals that I need. So I will be taking Vitamin D, Magnesium, Zinc, Selinium and a B6 complex. However because I have a sensitive system, I may not be able to tolerate them. If I can't tolerate these, I have been advised to get IV minerals.

The urine testing also showed high level of yeast. So therefore I will begin a regiment of Diflucan. We're going to hit it hard and take 4 full weeks of Diflucan. I will then take one week off and then take another 4 full weeks. I won't go on any new supplement until I'm off the antibiotics. However, I will start the Diflucan as soon as I get the prescription filled.

Living the Lyme Life (bump)

**Updated** August 8, 2009***

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

My Diagnosis
My Therapy
A day in the life of a treatment

My PICC Line Story Part 1
My PICC Line Story Part 2
Live Blood Cell first visit
Grey's PICC Line Story

Slow Progress
My LLMD appt
November 15, 2008 Update
Chelation Challenge
Mercury Toxicity (My Mercury test came back negative)

Living the Lyme Life Post
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC

Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results

Ups and down of Lyme
Live Blood Cell of Rob & Me
Previous Photos of me
Small Victories

Curious Lymies Goes to the Doc
OCD about ticks
The Serenity Prayer
August 8, 2009 Update

Supplement Strategy

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

Follow Up Appointment

I would suggest that most Lyme patients have other "issues" that can cause symptoms to arise. These other things for me are Nutrient Deficiencies, Adrenal Weakness, Low Normal Natural Killer Cells, Heavy Metal Toxicity, parasites and potentially low iron.

When I got to my LLMD the first time, we discussed the markers for Lyme Disease. I had joint pain in unspecified areas (it jumped around), fatigue & malaise, sleep disturbance, memory loss,
history of tick bite with bulls eye rash and a positive response to antibiotics. In February of this year, I got a CDC positive test result in the IgeneX Western Blot IgM. In the next two weeks, I will be having another test to see how LabCorp views my Lyme tests. The state of North Carolina only thinks that you have Lyme Disease IF a "normal" lab pings positive results. They also want the results within 30 days of the lab AND I seem to recall that they prefer both IgM and IgG to be CDC positive. So I'm crossing fingers that my LabCorp test will ping a positive result.

I've been taking an enzyme called Nattoserrazime. It's a blend of two potent enzymes which is used for cardiovascular, anti-inflammatory, respiratory and immune support. The benefit to this is that it supposedly helps ward off bacterial infections and supports immune health. I am also on EDTA. EDTA binds to metals in the body and helps you get rid of them. It binds to even good minerals so in order to ensure that it's not taking out too many good minerals I will have to be taking a "Trace Minerals." However, I have to make sure that I take it far enough away from the EDTA or it will just be wasted money (IE it will bind to the Trace Mineral and take IT out of my body instead of any heavy metals). I will also be taking Curcumin (Ker Kume In). It's believed to also have an anti-inflammatory and antioxidant effects. It may stimulate the immune system as well. Lastly on the Lyme front, I will be taking Paracide Juglans. This stuff is NASTY! I don't know exactly what it does, but I do know that it also helps kill parasites.

Because of all of the above, I will be having a nutritional panel taken the same day as the Lyme test. EDTA will be a 2 month supplement. Parasides will end as soon as I finish the bottle (*yeah*). Since the beginning of my treatment, my adrenal cortisol levels have been consistantly going down. This is NOT good. So they will test my cortisol levels to see where they are and I will continue addrenal support.

Last time I was tested, my Natural Killer cells were in the low end of normal. I am to order something called Low Dose Naltrexone. Originally Naltrexone was invented to help drug and alcohol addicts. Well it became clear that it seemed to help immune functions and a while back a doctor studied this and realized that in a very small dose ~ it helped improve immune functions quite a bit. Low Dose Naltrexone has been used successfully in Cancer and HIV/AIDS patients and more recently they've been using it on those with bacterial infections (like Lyme Disease). I would be taking 4.5 MG of this LDN at bedtime to help raise my natural killer cells. (I believe that the dose they use for addicts if 50 mg .. so you can see it's truly a very low dose).

Because my Chelation proved that I had some heavy metals, I will be having a test to see if it has caused any damage. This test will be done about the same time as my blood work. We're also going to really check out my Ferritin levels because some symptoms I've been having the last few weeks have been indicative of Low Iron levels. I will start Iron supplements as soon as my blood test has been completed.

On my supplement list:

Nattoserrazyme
Adrenal Cortex
Cod Liver Oil
Curcumin
EDTA (total of 2 months)
Immuzyme
Liver Drainage
Methyl B12
Total B
Vitamin C
Paracide (finish bottle)
Ultraflora
Iron Plex
Trace Minerals
I have more, but those are on my list sent home today!

Tests coming up: (August 19)
CBC
Comprehensive Metabolic Panel
Cortisol
Ferritin
Natural Killer Cells
Lipid Panel
Parathyroid
Vitamin D (25)
Zinc Plasma
CD 57
Lyme IgG and IgM
Several types of Urine testing.
Spectracell Nutrient Testing

Living the Lyme Life (bump)

**Updated** June 28, 2009***

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

My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Live Blood Cell first visit
Grey's PICC Line Story
Slow Progress
My LLMD appt
November 15, 2008 Update
Chelation Challenge
Mercury Toxicity (My Mercury test came back negative)
Living the Lyme Life Post
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results
Ups and down of Lyme
Live Blood Cell of Rob & Me
Previous Photos of me
Small Victories
Curious Lymies Goes to the Doc
OCD about ticks
The Serenity Prayer

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

The Serenity Prayer

God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.

About three weeks ago, I felt a twinge. The twinge of a headache. This wasn't just any headache. It rivaled the headaches I had pre-diagnosis. The twinge lasted three days. Shortly thereafter, I felt another twinge. The twinge of fatigue. This wasn't just any fatigue. It rivaled the fatigue I had pre-diagnosis. The fatigue lasted three days. Shortly thereafter, I felt another twinge. The twinge of vibrating knees. I placed my hands on my knees while bending over to talk with a child. It hit me like a ton of bricks. Shortly thereafter, I felt another twinge. The twinge of a sore throat, a cough, a runny nose. The headache reappeared and so did the fatigue.

The thing about these twinges is that I have felt them all before. I am omniscent when it comes to these twinges. The twinges and I are old dear friends. And yet I want this "old dear friend" to visit quickly and leave.

God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.

I have been granted with knowledge. I have a weapon against these twinges. Those weapons are the supplements that have been sitting on my kitchen table for 6 weeks. I chose to take a sabbatical for my Lyme & friends treatment. I had been in ongoing treatment for well over two years and I was exhausted. I gave myself a break. I pretty much have given myself a break since February when my PICC line was pulled. I wanted to see just how far I could push myself before I had to use these weapons. I haven't had an IV since February and have barely taken any oral supplements (with the exception of Protein shakes that I was heavily encouraged to make).

So now .. I take that step of courage to change the things I can. Last night, I courageously went over and picked up two new bottles of supplements. I filled a glass of water and drop by drop put these two new supplements into the water. Courage. I need courage. These new supplements taste nasty. I almost threw up the moment it hit my mouth. I learned one thing last night. Don't fill up a whole glass of water. Use about one ounce instead .. ;) (IE: Change the things I can).

Tonight I took my third dose of supplements. I am already feeling the effects. I am burning up and swollen. My head and teeth hurt. It hurts to breathe and I'm coughing so hard that my ribs and abs ache. My hands are shaky and it's only the 2nd day.

God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.

OCD: helps or doesn't help?

I'm sure if any of you reading has a tick borne illness you will completely understand the point of this post. I have OCD. I am sure some of you are thinking, "Now Jennifer ... I have seen your house. You are NOT OCD." While others are merely scratching your heads pondering where this post is headed. So I think an introduction is in order.

Hi, my name is Jennifer (insert Hi Jennifer) and I have OCD. Obsessive Compulsive Disorder is an anxiety disorder characterized by involuntary intrusive thoughts. When the person acknowledges these thoughts, it develops anxiety based on the dread that something bad will happen. So then they are compelled to do voluntary irrational actions that are time consuming to diminish the anxiety. What is my OCD you ask? What is my fear? What is my voluntary action? I believe you all know where this post is now heading.

My fear is my reality ~ my fear is that I would become infected with a new strain of a tick borne illness. My Voluntary Action is to check my body over and over for ticks. I do this every morning and every evening without failure. I check my body during every shower and every moment I get. Every little "tickle" produces fear in my soul that another little blood sucking creature has latched on.

The past week I have become less rigid on my fear of tick checking. I mean I am still checking, but the FEAR had subsided. However, these fears have invaded my self-conscious. I keep having vivid nightmares about these tiny arachnids. I just had on Sunday morning in fact. Most mornings when I wake up from my little arachnid dreams ... I immediately check myself over. I have this "irrational fear" that my dreams mean that it's really happening. Therefore, a tick check is immediately in order.

So Sunday morning, I woke from this dream and decided, "You know what. I am NOT going to let this dream control my life. I'm going on about my business and I am NOT going to do a tick check just because I dreamed about a spider and ticks." So I gingerly went to the computer and started my day. OCD will NOT control my life. The FEAR will not consume me.

I went to the bathroom for my morning routines and when I sat down on the toilet .. guess what I saw? After I screamed bloody murder, I realized that I have to have this OCD. There was a big ole fat Lone Star Tick attached sucking away! So you tell me, is my OCD (my daily tick checking ritual) irrational? The very moment I don't do this "irrational behavior" I find a tick sucking away at my flesh and blood! Of course after my husband so kindly removed the tick with a pair of tweezers and sealed in in a plastic bag just in case we need to test it later on, we performed a thorough tick check on the both of us. I fear this will be my daily OCD the rest of my life. How can I live through such fear? Every tickle causes me to look.

Who else does this? Am I alone or do the other sufferers of LD do this to? It's insane to "normal" people, but isn't it actually SANE to check? Or am I so far gone into the insanity that I don't realize that this isn't sane?

Living the Lyme Life

**Updated** June 14, 2009***

I noticed that there might be a few new folks learning about my journey. Go to these old blogs to see how far I've come. I update it every so often after writing a post that is relevant to my health.


My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Grey's PICC Line Story
Slow Progress
My LLMD appt
November 15, 2008 Update
Chelation Challenge
Mercury Toxicity (My Mercury test came back negative)
Living the Lyme Life Post
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results
Ups and down of Lyme
Live Blood Cell of Rob & Me
Previous Photos of me
Small Victories
Curious Lymies Goes to the Doc

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

Curious Lymie goes to the Doc

How am I doing? I've been asked this a lot lately so I thought I'd take the time to update.

I am actually doing extremely well. I have been staying up later and sleeping less. I still have moments of pure exhaustion, but usually after one great night of sleep I wake up refreshed. This is something I haven't felt in over a decade.

Even though I am doing wonderfully, there are a few things that are bothering me. First one is hard to explain. I have never been able to explain it, but it's this feeling in my knee. I touch it and it feels like something is under there. It moves all around and feels extremely weird. I have never found the right words to describe it, but others that have felt it just say "wow that's weird." The second is that yesterday, a new mole popped up on my ear. As I am sure you guys are just as OCD as I am about your skin, I check out my skin every day. I am constantly looking for ticks. Ironically just yesterday morning, I was checking out my ears b/c there was a tickle. One of my ticks that I have had was attached to my ears so I am always checking them out.

Well I was teaching a class yesterday when I felt a slight "pain" right on the top of my ear. So of course I touched it. I realized there was a "rough spot" that sort of felt like a tick. So I immediately went to find someone else to take a peek b/c it sort of looked like a tick from my view in the mirror. After work, I drove to my Primary Care Physician (I haven't been to that office since Feb. 07, but I knew that my nurses weren't in at my LLMD's yesterday and that my LLMD had a full client load).

It was in that moment I realized how much I love my LLMD. I spent 30 minutes in the waiting room. I spent another 10 minutes in the patient room (which is actually a really great time for this particular office .. once I fell asleep and two hours later ... I woke up ... I still hadn't been seen yet ... obviously) only to see the physician for a whopping THREE MINUTES! I even timed him as soon as the door opened. He took about a 5 second look at my ear .. and spent the rest of the time typing on his computer.

Oh and get this: So I have this other bump on my leg. I showed him that too (which he looked at for a whopping 5 seconds, but at least he FELT that). He told me (and I hadn't told him about my Lyme Diagnosis yet) ... it looks like a spot where a bug or tick may have bit my skin and maybe I didn't get it out all the way and the skin grew over it leaving a bump. It was at this point that I told him about my OCD about skin checking for moles, bumps and ticks because of my Lyme diagnosis.

As I explain that I am a little OCD about my skin and how I check myself every day and look at my moles every day .. and I know this one wasn't there before .. he blew me off and said, "these things pop up from time to time. Don't worry. Do you need something for anxiety?"

OMG .. I wanted to slap the man. Then he said if I wanted, he would slice it off to call and make an appointment for another time for him to do so. Yeah .. like I want a man who looked at my ear for 5 seconds "slicing" at my ear! I figured out that if I paid 20 bucks for the 3 minutes he was with me .. for a full hour (which is what I get at my LLMD's office) ... I would have paid ... 400 dollars.

So yeah, the mole is a little frustrating. It is very annoying and even somewhat painful and the doctor didn't take me seriously. Just thought I'd share a day in the life of a Lymie going to regular doctor.

Living the Lyme Life (bump)

**Updated** June 14, 2009***

I noticed that there might be a few new folks learning about my journey. Go to these old blogs to see how far I've come. I update it every so often after writing a post that is relevant to my health.


My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Grey's PICC Line Story
November 15, 2008 Update
Mercury Toxicity (My Mercury test came back negative)
Living the Lyme Life Post
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results
Ups and down of Lyme
Live Blood Cell of Rob & Me
Previous Photos of me
Small Victories
Curious Lymies goes to the doc

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

Be warned, not pretty

** be warned ** some of these photos .. you will see me at some of my sickest points (when I would allow photos that is .. b/c at my very sickest I wouldn't allow photos) and you may laugh at some of them. ;)


Thinking back to how I felt BEFORE. Before I knew I what I had and before I knew how much worse I would feel. When I wasn't working, I spent my world on that couch (that is before Dexter tore it up).



I was either sitting up barely or lying down. I was too tired to do much else.


More and more of my days were spent like this:



But even still I would put a smile on my face and do silly things every once in a while:



And even AFTER my diagnosis and picc line insertion, occasionally I would STILL put a smile on my face and do something silly!





SO I challenge all of you bloggers to do something silly today and share with all of us.

Our Live Blood Cell Answers

To review, I had a Live Blood Cell Analysis in September of 2008 to see how my red & white blood cells were doing.

In September this is what we saw:

"In the wet sample, she saw Lyme Spirochetes as well as Lyme Cysts in my white blood cells. One blood cell she looked at had four or five cysts in it. They were floating everywhere and eating some of my red blood cells. While we were watching, we saw one spirochete break off one blood cell and swim towards another. We also so many spots of Yeast. She said that Lyme and Yeast were definitely a concern. We saw several bacterial blobs that looked like a bunch of spirochetes bunched together with like tentacles (she called them blebs)."

Today: Show much improvement. Most of the white blood cells were clear and functioning properly. We saw a few bacterial blobs, but they weren't Too Numerous To Count (TNTC) this time. We saw areas of Yeast, but it was no where near like the last time. The difference between the Wet Sample last time and this time were astounding. I'm definately improving.

Now the problem was that I still had Lemon Drop Red blood cells. This means that I have Bowel Toxicity. I don't know how they know this, but ... that's what it indicates. There were also several spots on the wet and dry sample that showed Liver Toxicity. I need to work on cleansing out these two areas. Although, I will likely always have Lyme cysts ... if we work on the Liver & Bowels, then the yeast and parasites should improve. My Red Blood cells last time were all on top of each other. Also some had missing parts (IE my iron was missing). This time, they were mostly all intact and spread out the way they were supposed to be. An occasional Red Blood cell showed the Lyme Spirochetes.

My follow up just consisted of things that we thought we could do to help detox the Liver & Bowel. Also we are thinking if we clear this things up that maybe my bump problem will clear up too. He's *never* seen my bump problem on any of his patients. Aren't I special? ;0

Onto my husband's microscope:

For some time, I've thought that my husband has Lyme Disease. The last few months he's gotten sick several times including a major bout of bronchitis, the stomach flu and also once his lip got really swollen out of no where. He's had symptoms the last few months that really lead us to concern so we scheduled a blood cell analysis for him today.

My heart is very heavy over what we saw on his slides. His biggest issues are Lyme Disease, Cardiac problems, Parasites and Lymphatic Issues. The doctor said they were number 4 out of the scale of 0 to 4 (with 4 being the most severe). His Adrenal functions were about the same as mine and his Lyme cysts were on the scale of 3. He also has Liver Toxicity. I wasn't in the office with him during his blood cell analysis as I was in my follow up appointment. We plan on getting him scheduled into see my doctor as soon as possible.

The problem is that it costs about 500 to go in for the first appointment and today we spent about 1325 on the credit card. That doesn't even include the supplements that I will have to pick up over the next few weeks. *sigh* Here we go again.

There's the update.