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Old 01-17-2008, 04:47 AM   #1
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Join Date: Jan 2008
Location: philadelphia, pa
Posts: 45
ddanny52 HB User
lYME DISEASE

Hi, My name is Danielle and I fell ill Sept. of 07. My neck and upper back began to hurt - severly. I had an MRI which did reveal a c5/c6 bulge - which i probably have been having due to chronic back pain in the area for six plus years. One week later I developed fatigue, dizziness and severe head pressure. Which have progressed over the past four months as - left ear pain, with right ear pain at times, left temporal pain, hot/cold sensations in different parts of my head, ear fullness, sinus pressure that comes and goes, sensations in my head that feel like waves, pressure changes in my head, intermittent blurry vision, gum pain, left sided face pain - feels like it want to go into a bell's palsy but has not, also,two episodes of slurred speech and my legs feeling heavy like i could not walk. joints hurt at times - but not severly to where it is an issue. also, shortly after i got sick i develped two weeks of severe migraines and have not had that is three months.

I deal with dizziness everyday and headaches. In Oct. 07 I went to ER for headaches and dizziness and other symptoms and finally on my fourth ER visit in which an ambulance had to bring me - i was admitted.

I had spinal tap - negative, MRI/MRA of brain - negative, I am negative for Rhematoid arth, neg for MS, neg for lupus and negative for many things. My blood work is normal - except one of my antibodies was elevated indicating possible lyme. This is when it all started. My symptoms became worse - with extreme fatigue and I could not eat or get out of bed.

I have seen eye docs - everything neg, ENT - for inner ear testing and middle ear testing and balance test - negative. I have see neuro doc - got nerve blocks in my head - didn't last so it is not occipital nueralgia, have been to PT for disc problem - didn't help. I have had two rounds of nerve blocks in my necks which help with headaches and dizziness a little for the first few days, then all my symptoms come back.

The doctors say it is not the disc in my neck. I have seen a cardiologist, ortho, nuerosurgeon, infectious disease doctor, ENT, nuero, eye doctor, and I am following a rhuematologist who specializes in Lyme.

I have two negavitive western's blots, negative elisa - so my positive antibody was probably a false positive. I was still treated with two months of doxy - and have felt better. my symptoms listed above are all still there - and my energy has increased.

however, everyone tells me nothing is wrong as most docs do in this case. I have had an extensive work up and remain with lyme like symtoms. my lyme doc thinks is could be but isn't sure. i am not on antibiotics and she thinks i have post lyme fibromyalgia.


any comments or recommendation - i would love. i feel like i just have to live with this and feel there is no one else to help. should i fight to get on more antibiotics or fight for IV therapy even thought my wester blot is negative.

i am from PA and have talked to a lot of people with same symptoms with negative blood test. some test positive years later.

instead of feeling sorry for myself, i fight it every day and live the best i can. some days are hard though. i have a six year old and two year old. it is hard for me to concentrate an be a good mom when i have dizziness and headaches. ativan helps with this.

i take one every morning and go to the gym no matter how bad i feel to try and stay focused. i have gained weight with this too. my body is doing all kind of weird things and the docs say nothing is wrong.

what to do?

 
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Old 01-17-2008, 11:40 AM   #2
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Join Date: Mar 2007
Location: Canada
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kdmari HB User
Re: lYME DISEASE

Hi Danny,
I feel so bad for what you're going through. I've had similar symptoms that have come and gone for the past 12 years and was just diagnosed by a LLMD with Lyme Disease. I'm starting on oral antibiotics now. It's been hard enough on me with just my husband and my dog to look after. I can't imagine feeling this way and being a mom to 2 small children at the same time! Hang in there.

Interestingly, I had a herniated disc this past summer, and I've since learned that Lyme Disease can cause that to happen. So the fact that you had a herniation could possibly be all tied in. Of course I'm no doctor. I haven't had results from my most recent blood tests yet, but my last Lyme test was negative, and I won't be surprised if this one is too. However, my doctor had no hesitation based on my symptom history diagnosing me with clinical lyme disease. I'm sure through this forum you'll be able to get the name of a good Lyme doctor in your area. I'd fight long and hard to get in to someone who will pay attention. I've seen close to 20 specialists over the years, neurologists, cardiologists, rheumatologists, ophthalmologists, ENT's, you name it, and none of them were able to find anything wrong. It was exTREMEly frustrating, and I felt like everywhere I turned, doctors chalked me up to being depressed or a hypochondriac. Because my case has gone on for so long, I'm having more and more neurological issues, such as extreme dizziness, being off-balance, memory issues, etc. I wouldn't rest until you get some answers and some help. In the meantime, I've been told that Lyme thrives on sugar, so cutting all sugar out of your diet and limiting your carbs may be something you can do to help until you get in to see the right doctor.

Let us know what happens.... and take care!

 
Old 01-17-2008, 12:38 PM   #3
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Join Date: Sep 2006
Location: Bellingham, WA USA
Posts: 257
monarog HB User
Re: lYME DISEASE

I too herniated a disc in my neck 2.5 years ago. About 5 months after the herniation all of my neurological issues started including much of what you talk about, a lot of facial/tongue symptoms, heavy legs, numb feet, twitching muscles everywhere, internal vibrating, tremors, crazy startle reflex, susceptible to crazy amounts of static shock in the summer when no one else seemed to be having it, dizzy/off-balance, eye pressure, light sensitivity, weird sweating patterns, itchy skin, sudden onset of high BP - that I NEVER had before, Raynaud's Phenomenon - I'm sure there's more, but that's a summary. It was finally determined that my disc was compressing my cord, had surgery March 2007. I am better; however, most all symptoms remain, they wax and wane - some days/hours better than others. Instead of just acutely sick like I was initially - it's more ongoing and chronic in nature. Like it was mentioned, it appears somewhat common for Lyme patients to blow a disc. I had sort of given up; but, am now going to see a doc on Monday the 21st who is not an LLMD, but is very educated on Lyme (and is willing to look at other things "out of the box") and also willing to use Igenex and Quest Labs to look closely at the possibility of Lyme or other problems (vs "it's in your head," or "I have no idea, sorry.") My symptoms are too far reaching to be a disc issue alone; at least that's what the docs say as they are writing an Rx for Valium and sending me on my way, ugh! Keep us posted how things go. I will update once I know more after my appt. and lab testing with this doc. Good luck. Mona

 
Old 01-23-2008, 09:12 AM   #4
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Join Date: Nov 2007
Location: Seaford, NY
Posts: 134
Braveheart07 HB User
Re: lYME DISEASE

Danny--Hi,
Sorry to hear of your problems. This is a great place to find help--keep looking and read alot of posts. I have been having some neuro issues since Aug.'07...not nearly as severe as yours, but poor balance, heavy legs,muscle twitching, weakness mainly in left hand, but also in general, startle reflexes are very sensitive...I also have a herniated disc,(C5-6) and a bulging disc(C6-7). I am seeing 2 neurologists, and have spoken to 5 neurosurgeons about correcting the neck issues, but the consenses is that "something else is going on"....I am contemplating the lyme route, although I read that it is very frustrating...lots of false test results, both ways. If you read the lyme posts here, most people in the NE consider Dr Raxlen to be the best there is. He is in NYC. (a 2 hr drive for you )---he is very expensive to start, but everyone says they'd pay 10x his fee, because he's worth it. Whoever you use, make sure they use IGENEX labs in CA.----that's widely recognized as the best lab.
I wish you all the best----keep the board updated.
Doug

 
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