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.
Wednesday, April 11, 2012
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