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Old 10-31-2008, 08:19 PM #1 (permalink)
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Question Lyme tick bite when I was about 10 or 11 years old

Ok, so, I spoke with my first neurologist today and got interesting news. My Lyme test is positive, but he said not to get my hopes, that he expected it would be (?).

I had a confirmed Lyme tick bite when I was about 10 or 11yo (I'm almost 28 now) when I was at summer camp. Had the bulls eye rash on my arm and everything. Went to my pediatrician about a week after returning from camp when we noticed this bite looked different from my multitude of other bug bites. I was put on antibiotics and that was the end of that. Never thought about it again, other than keeping in my head that it had happened. The rash went away and I never had a known symptom.

So now I'm being diagnosed with ALS 17 years later? Everything I'm reading is saying one can be misdiagnosed for another, but wouldn't that mean the bite would have had to have been more recent? I'm not reading anything that says antibodies would remain so many years later, especially if treated with antibiotics early enough. I guess a false-positive may be possible, but it's hard to imagine.

I don't know what I'm getting at really, just sort of trying to talk this out to organize my thoughts and see if anyone else has any ideas? I'm a little impatient in waiting for my 2nd opinion which is coming in November, and they'll probably give me more information, but I want to know now! I'm so not good at waiting. *sigh*

-Michelle
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Old 11-01-2008, 09:07 AM #2 (permalink)
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Default re: Lyme tick bite when I was about 10 or 11 years old

the positive lyme test may be good news.
all the information i have read on lymes is that it is harder to get a positive test even if you have it.
alot of people with lymes will test negative,crazy i know.
ask them to do the test again to double check,if it comes back positive again then it probably is lymes.
some things can lay dormant in us for a long time.........................only some day to rear its ugly head.

ps,lymes can imitate als but there is no evidence that it can cause als.
the antibiotics you origionally had may not have been enough ,so it has still been there all this time.
just trying to reasure you.
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Old 11-01-2008, 01:43 PM #3 (permalink)
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Default re: Lyme tick bite when I was about 10 or 11 years old

Michele,

I would definately see a lyme disease specialist. Were you diagnosed with ALS from your local nuero,
I see you say you are waiting for second opinion. Do you have and other symptoms than weakness in your hands? You can go to the lymenet forum and request lyme info on lyme dr in your area.
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Old 11-01-2008, 02:19 PM #4 (permalink)
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Default re: Lyme tick bite when I was about 10 or 11 years old

I had a tick bit 15 years before ALS and was treated for lymes as well
I told my neuro and she said that since it was treated it was not related to the ALS.

So I feel like you do



Confused!


Pat
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Old 11-01-2008, 05:11 PM #5 (permalink)
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Default re: Lyme tick bite when I was about 10 or 11 years old

Quote:
Originally Posted by crystalkk View Post
Michele,

I would definately see a lyme disease specialist. Were you diagnosed with ALS from your local nuero,
I see you say you are waiting for second opinion. Do you have and other symptoms than weakness in your hands? You can go to the lymenet forum and request lyme info on lyme dr in your area.
He wasn't really my local neuro (3 hrs away from home isn't local!), but was the one I was sent to by the neurosurgeon who I was referred to by my orthopedic surgeon after an attempted nerve decompression on a nerve that wasn't compressed to begin with. Confused, yet? But yes, he's the first one I've seen in this mess.

Aside from weakness and finger drop in my right hand and beginning weakness in my left, I have fasiculations in all extremities, almost absent abdominal reflexes, hyperreflexia everywhere else, and tremors. It's funny how the hyperreflexia and tremors are things I've had for a few years at least, but never really thought were anything.

I think I will check out if there's a Lyme doc at Duke when I go for my 2nd opinion.

Thanks for the info!
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Old 11-01-2008, 05:33 PM #6 (permalink)
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Default re: Lyme tick bite when I was about 10 or 11 years old

HI

I hope you get some answers with the lymes! It is strange that I had a "bite" on my leg while preganant. I dont know about bullseye, but it was round and spread out and lasted weeks! I had a test, may have been too early but all my 'stuff' started around that time along with a flu vaccine after a c-section. It is all soo confusing...But you should pursue this! I also live in a sub that is cut out off the woods with alot of deer.
I dony know your story, but I would think the + test is a good yhing. It can take up to a year on meds to grt rid of lymes.

brst of luck
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Old 11-02-2008, 10:00 AM #7 (permalink)
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Default re: Lyme tick bite when I was about 10 or 11 years old

Michele,

I don't think you will find a lyme specialist at duke other than a infectious disease dr.
Did you have a dirty emg that correlated with ALS? Or is your dr just giving you a probably based on your clinical findings. All the things you mentioned can be Lyme.

hang in there,
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