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Old 10-26-2010, 09:02 PM #1 (permalink)
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Default Anyone have both ALS and Lyme?

I was diagnosed with ALS 3/10. I also have a clinical diagnosed of Lyme and coinfections. I'm being treated with iv ceftriaxone and feeling much better.

I have been exercising and my legs have improved strength but not muscle bulk. My arms have not improved and my shoulders are still atrophied. It seems that exercise helps quite abit and my energy is good.

My question is: Could my Lyme symtoms be improving but I may still have ALS since the atrophied muscles have not improved? I've been on ceftriaxone for 6 months now.
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Old 10-27-2010, 03:21 PM #2 (permalink)
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Unhappy Re: Anyone have both ALS and Lyme?

yes I have both and did the Lyme treatments for 2 years but the herx reactions were so bad that the treatments made my ALS worse. Sorry that I don't have more positive information for you.
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Old 10-29-2010, 02:04 PM #3 (permalink)
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Question Re: Anyone have both ALS and Lyme?

NotALS, what were your Lyme symptoms?

I have a preliminary diagnosed of ALS and was hoping it might be Lyme instead, since I am outside quite a bit in tick areas, but none of my symptoms pointed to Lyme, and both my neuro and primary Dr have said they truly do not think Lyme is a possibility. I've been tested twice, negative both times.

I'm still trying to figure out if it is worth pursuing Lyme as a possibility, so it would help to know how others have approached this and what their symptoms that pointed to Lyme were, and if they're getting better on treatment for Lyme.

On the other hand, I have limited energy and resources to direct to healing/dealing, so I don't want to go down a road that's really useless.

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Old 10-31-2010, 11:15 PM #4 (permalink)
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Default Re: Anyone have both ALS and Lyme?

Hi Sue,
I still don't know if my ALS is progressing or it is lyme. Initially, my strength improved alot on ceftriaxone. I never had a positive lyme test although doctors suspected it for many years and did many CDC tests.

If you want to learn more about lyme, try lymenet.org, its a great website and will answer all your questions. My arms are still as weak as when I started ceftriaxone and now my neck is weaker. I have trouble lifting up my head when I bend over. sigh.. I'm so frightened.
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