could it be???

[Candace5440]

I have been ill for over 7 years. It began when I was at work 7 years ago and my head began hurting so bad I thought I had an anyuresem. I left work and went to the emergency room. Once I got to the emergency room they did a cat scan of my head and said they seen nothing gave me some pain medication and sent me home to follow up with my doctor the following day. When I arrived home I noticed a huge bite on my neck that I thought was a spider bite because it did not look like an ordinary insect bite. The following day I went to my family doctor about the pain and headaches and even asked him if they could have been from this bite that maybe it was a poisinous spider. The doctor in turn told me no it was an ordinary insect bite and sent me to a neuro to see if I could be having miagranes. Well as testing continued ny nuero diagnosed me with chiari malformation I. I in turn 8 months later had brain decompression.  I have still had the problems since my surgery, I am actually not working now because my job of 5 years asked me to take a medical leave because I have missed so much work the past year because of so many ailments. They are testing me right now for every disease imaginable and i have almost every symptom of lyme. They did do a spinal tap which they said came back negative for lyme and they sorta dimiss it because I am from louisiana and lyme is not located here they say. The thing is when this all began I was deer hunting with my ex-husband in mississippi and this was around 2002.  Doesn't this come from deer ticks?????? When they did my spinal tap my csf pressure was very high 26 to be exact and as I read that is another symptom of lyme. My white blood cell count is also very high doesn't that mean my body is trying to fight an infection??? Someone please help me and give me some type of idea!

[Candace5440]

Can someone help me please???

[patsy10]

It could be lyme but I would see a lyme specialist for a good evaluation to rule this in or out.

I was also diagnosed with Chiari 1 malformation.  However, what is interesting is I developed it over a 6 months period when my neuro symptoms were the worst.  I had blurred vision and all a host of severe symptoms.  I could barely walk.  Also in this timeframe I developed a meningioma in my brain as well.  My MRI was normal 6 months prior to this.  I personally feel that I had swelling in my brain during this time which caused the cerebellar tonsils to drop.  I was told by one of the neuro's I saw that a Chiari 1 does not require surgery, that only the type 2 and 3 need surgery.  He said a type 1 would not cause any of the symptoms I have. It is also my understanding that the spinal pressure is lower than normal with Chiari due to the obstruction of CSF flow.  My spinal pressure was so low it took an hour and a half to get spinal fluid.

Lyme rarely shows up in spinal fluid even if present.

[Candace5440]

Well I also have blurred vision, extreme headaches, extreme fatigue, weakness in muscles, joint pains, twitching, tingiling in hands and feet, nausea, dizziness, vertigo, ringging in my ears, brain fog, trouble with coordination, trouble with balance, disorientation and even passed out a few times. I also have times when my heart races and feels like it is going to jump out of my chest. My neck hurts so bad at times that I can not even turn my head. I can't look up or down and my spine feels as though it is breaking in half. I have trouble finding words when I speak I even sometimes slur my speech I can not even do a simple math problem anymore. My doctors won't even let me drive so I am not working. But no one knows whats wrong? When they did my spinal tap my csf actually poured from my back it felt like someone turned a hose on! And I do have chiari and I did have surgey and type 1 does require surgery alot of times it all depends on how bad the symptoms are. The surgery is done to stop the progression of symptoms.

[wonko]

I agree with patsy10, your case sounds consistent with Lyme but there is so much overlap with other conditions, you need an expert to see you for a diagnosis.

I am sorry that you're in so much discomfort and for this long.  You're correct, deer ticks are the primary vector of Lyme disease.

As you may know, the testing for, diagnosis of, and treatment for Lyme disease are all topics about which the medical community is strongly polarized.  If you haven't done so, I'd suggest reading Pam Weintraub's "Cure Unknown" (can check your library, but the paperback just came out and is around $10) and try to see the documentary "Under Our Skin."  Both the book and movie have very good and easy to find web sites with a lot of information for a person new to Lyme and still seeking a diagnosis.

I also had a spinal tap, but it was uneventful.  I did have white matter lesions on MRI, which Lyme can cause.  My white cell count was a bit high on a few occasions (I went through a lot of testing for about a year before getting to a Lyme literate doctor), but the result was always shrugged off.  I also had a few other non-specific abnormal tests, but nothing conclusive.  I tested negative for Lyme on several occasions.

It's a confusing situation to be undiagnosed.  Don't give up and keep us posted.