Thread: ALS/Lyme Help
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Old 03-14-2010, 02:21 PM #7 (permalink)
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Join Date: 2010
City: Auburn
State: Alabama
Country: US
Posts: 71
kelly11016 is on a distinguished road
Default Re: ALS/Lyme Help

Hi all--

I have been following many of this forums' threads for a couple of weeks. I believe that I am ready to contribute as I was diagnosed with Lyme's Disease exactly one year ago this week. I was diagnosed via Positive CDC criteria Western Blot. My imitial complaints were dizziness, extreme vertigo, clumsiness, forgetting familiar names, and extreme fatigue. I had to practically beg for the Lyme's titer and this was before I knew of the controversy surrounding Lyme's Disease. All I knew was that I had been bitten by a deer tick while at Army basic training back in 2005 and believed to have been reinfected in Spring of 2008 after I had a huge circular rash on my torso and soon after battle a really bad upper respiratory infection that sent me to the hospital with a fever of 104, after which I have never felt well.

So you may wonder what in heck I'm doing here on the ALS Forums...Well here it is a year later only a treatment of 10 days of doxy and in a world of panic. I gave in to my GP when he said a few days of doxy would be enough to cure me of Lyme's. It did stop the excessive twitching, jerking, and joint pain for a long time. I am a 28 year old female physicist in Alabama and I feel like beginning this fall everything started going downhill very quickly. I noticed during this past semester I began having trouble with my speech. I wasnt slurring or studdering really...mainly just couldnt remember words very quickly to put my sentences together. I also noticed a couple of times while reading my text books looking down I drooled. I also began these crazy OCD symptoms and rituals that I continue to suffer with. This semester I have lost my car a couple of times, parked on the sidewalk not realizing it, and barely able to remember what I had for breakfast and even forgetting my boss's and my date's name one time..(that was funny). Progressively I am unable to concentrate on physics problems and often I have to read a passage over and over again before I can comprehend it. My IQ is still intact at a 156 thank goodness.

Other symptoms I have had--

I have horrible acne and scalp acne since being treated with doxy.
I am allergic to all hair care products except Head and Shoulders and dial soap.
I am allergic to milk and nuts now.
I get these electric shocks in my neck without moving it at all..it feels like someone slaps me.
I still get the muscle jerks.
I get these creepy crawley sensations all over my body kinda like ants crawling
I feel these vibrations in my legs and painful jabs in my body
I get chest pains where it feels like andre the giant is hugging me'
My heart also slows down and I have to cough to get it to start back up

Crazy I know. I had an ID refer me to a neuro for suspected MS and this is where it all brings me here.

I went to the neuro and had a normal exam ordered MRIs of Lumbar and brain all clean. All my bloodwork clean. The next day I started getting fasciculations all over my body. I felt under attack. I had a few of these in my buttocks over the fall but never really was bothered by them because it only happened a couple of times. I went back to the neuro the next week after an onset of numb toes that just wouldnt subside to normal. I mentioned ALS and he said def not but ordered the cpk and enzyme workups which were normal. Now here I am just a week later obsessively worrying that my lyme's has triggered bulbar onset of ALS. I had a normal emg two days ago but still afraid it is too early. I am having no difficulty swallowing unless I am anxious or thinking about it. My speech is still not slurring and my tongue is not fasciculating even though my neck is. My right leg is percieved to be weak and feels heavy. I am also having electric shocks when I pick up heavy objects with my arms.

My doctor ordered another Lyme's titer and my neuro wants an LP this monday to check for neuro lyme. Does anyone know what are the odds that these tests will still show positive for lymes? I am def convinced lymes causes some ALS but also agree that after the onset of ALS via Lymes it is very difficult to start. My doctor says its just a waiting game now until my WB comes back. If it is positive I start another round of antibiotics. All I know is my doctor is very regretful of not treating me via IV rocephrin now that I am presenting with ALS symptoms. I do know of a couple of women here in Alabama that had Bulbar onset ALS and caught it really early and were treated for lyme's and got better and were alleviated of their ALS diagnosis..so I just pray it is not too late for me.

I would love to hear any of your thoughts and appreciate all of your prayers.

Love,
kelly
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