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Old 08-11-2008, 10:13 AM #1 (permalink)
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Default DX'ed with Lyme Disease, still fear ALS

I had a clean EMG visit to the neuro. My muscle velocity times were all within range of normal, and my reflexes were good as well as my strength tests. She said I had no elevated levels of ? (I forgot what its called) that would indicate NMD or ALS. All waves were positive sharp waves and looked fine.

I returned home and continued to worry about ALS because the cramping and twitching was still there.

It turns out I was diagnosed with lyme disease less than two weeks ago and it was in between stage I and II, but I am still very scared of ALS and that the lyme is a correlation to ALS that will develop. I have foot arch cramping and left leg irritation, as well as fascs in those areas, also have some left hand cramping and left arm pain. I started doxycycline that day (will be 2 weeks ago this monday).

I have some concerns that lead me back to ALS fears:

--My voice has been cracking the past few months for no reason, like a young man in puberty stages.

--My gums bleed after I brush my teeth i the morning. Not visible amounts, but I can taste a hint of it.

--The left foot arch cramping, muscle left leg irritated, the fasiculations, and being bothered on my left side in general. Left shoulder joint pain, left hand cramping and left arm muscle pain.

--I have heard of many people correlating Lyme to trigger ALS or the two being related. I am worried that basically, Lyme was not good news in regards to my fear of having ALS.

--My GP said yesterday in regards to my left side bothering me that typically with lymes both sides are affected. Other than when I first noticed the overall flu-like soreness; primarily my left side has been the bother. At first onset it seemed everything hurt.

*First few days on doxycycline I felt better and pain and muscle ache reduced, but now it is back as is the cramping in my left foot arch. I know this could be a Herxheimer reaction, sometimes 'Herxing' occurs when the toxins in the body are being killed off and you actually relapse. The past 3 or 4 days I've been feeling worse even continuing with the antibiotic treatment.

I am afraid that ALS will develop or already is and just isn't being seen. I know this could be a herxheimer reaction also which is what I'm hoping. Still scared of ALS though. let me know your thoughts thank you.
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Old 08-11-2008, 10:53 AM #2 (permalink)
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Clint,

Congrats on the Lyme diagnosed, (as horrible as that sounds it beats ALS). Lymes mimicks ALS and alot of other things. It can effect the UMN and the LMN. I would concentrate on treating the lymes. I know you are still worried about ALS but you had positive tests for lymes. I would be jumping up and down if something that mimics ALS came back positive for me.

What test came back positive for lyme?
How do they tell that you are inbetween stage 1 and stage 2 of the lymes?
Are you seeing a Lyme specialist or just your GP for treatment?


hang in there,
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Old 08-11-2008, 11:13 AM #3 (permalink)
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Quote:
Originally Posted by crystalkk View Post
Clint,

Congrats on the Lyme diagnosed, (as horrible as that sounds it beats ALS). Lymes mimicks ALS and alot of other things. It can effect the UMN and the LMN. I would concentrate on treating the lymes. I know you are still worried about ALS but you had positive tests for lymes. I would be jumping up and down if something that mimics ALS came back positive for me.

What test came back positive for lyme?
How do they tell that you are inbetween stage 1 and stage 2 of the lymes?
Are you seeing a Lyme specialist or just your GP for treatment?


hang in there,
Not sure what test it was for the Lymes, all I know is the first blood drawn for a lymes test resulted in a positive diagnosis for lymes.

My GP has been practicing meds for a long time, he's pretty good at getting to the bottom of things. He really helped my mom when she ended up with a bad infection and no one else could find what was wrong.

My GP ran a second test (I forget the name of it) to test whether it was early or late stage and how long its been in my body. He talked to me yesterday about the results and was telling me that based on the levels that came back I'm in between stage 1 and 2. He said that it could have been 2 to 3 months or 3 to 6 months that I've had it.

Does the lymes diagnosis and clean EMG mean I should not worry about ALS or NMD?
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Old 08-11-2008, 11:25 AM #4 (permalink)
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I think my neuro said that Lyme was one of the things they were testing for when they did the spinal tap.

I don't know much about Lyme disease, but there is some sort of treatment for it, right?
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Old 08-11-2008, 11:26 AM #5 (permalink)
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Clint,

I would not be worrying about ALS or MND if I were you,

1) clean emg
2) you are 25
3) tested positive for lymes

I would get off of this forum and find a Lymes forum. I reread your post and all that anxiety will really make your symtoms worst.

good luck,
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Old 08-11-2008, 11:37 AM #6 (permalink)
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Quote:
Originally Posted by crystalkk View Post
Clint,

I would not be worrying about ALS or MND if I were you,

1) clean emg
2) you are 25
3) tested positive for lymes

I would get off of this forum and find a Lymes forum. I reread your post and all that anxiety will really make your symtoms worst.

good luck,
The worry I have though resides in the fact that people who have lymes often develop ALS and there are some who think that there is a correlation that the lymes actually triggered ALS.
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Old 08-11-2008, 12:23 PM #7 (permalink)
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I am not sure about triggering. I think that some people may have als and be told that it is lymes and it turns out not to be. BUT you have a positive lymes! that is awesome. I have heard that it can take a long time on the meds and they need to be powerful.

try to be rest assured. Everyone hear would love to hear that they have tested postive. I was tested for that when I was pregnant because of a strange bite. I often wonder about re-testing thinking that it may be have been to soon to show?

good luck and stay positive.

april
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Old 08-11-2008, 12:25 PM #8 (permalink)
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Quote:
Originally Posted by awieleba View Post
I am not sure about triggering. I think that some people may have als and be told that it is lymes and it turns out not to be. BUT you have a positive lymes! that is awesome. I have heard that it can take a long time on the meds and they need to be powerful.

try to be rest assured. Everyone hear would love to hear that they have tested postive. I was tested for that when I was pregnant because of a strange bite. I often wonder about re-testing thinking that it may be have been to soon to show?

good luck and stay positive.

april
So you believe I am in the clear as far as ALS goes?
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Old 08-11-2008, 12:50 PM #9 (permalink)
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YES! you have a postive test for it! LYmes has all different symptoms. I understand your fear, I really do. but go with treatments and research all that you can on lymes. Find a forum for it and see if those folks who have it, have the same things as you. Search lymes on this site, I believe a year ago that jamiet posted alot of info abuot it and the treatments needed for it.

good luck and focus on lymes!
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Old 08-11-2008, 01:02 PM #10 (permalink)
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But I've read where some people think that Lyme develops into ALS. Is this a crazy thought?
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Old 08-11-2008, 01:14 PM #11 (permalink)
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Yes, Clint it is a crazy thought!
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Old 08-11-2008, 01:18 PM #12 (permalink)
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but something peculiar I've noticed, is that many of the cases of lymes are also where many afflicted people with ALS are located:

NY, New Jersey, Canada, Michigan, Florida, Connecticut, Ohio..... places in high lyme areas.
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Old 08-11-2008, 09:02 PM #13 (permalink)
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Clint you are acting like you want us to say yes you will get ALS soon.Is that what you want to hear? I am confused! Your a Lucky Bastard You have Lymes.and not ALS Do you know how many lymes test I had and was praying for a positive and even a spinal tap I would have done anything to get any other DX than ALS .Your a young man enjoy your life.

Pat 1
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Old 08-12-2008, 10:26 PM #14 (permalink)
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hey clint

are you taking the roto antibiotic treatment? ( I dont know if that is the name of it, but it is close to that.)

Get on your treatment, and it can take a while. A mom in my area had it really bad and was down for alomst a year. she is fine today. My husbands friend had lyme and he almost died and took awhile to recover. so give it time. I understand your fear and need for assurance but you should focus on lyme. When I had my colon infection I thought forsure it was colon cancer or crohns and it turned out to be somthing that I never heard of! (C-DIFF) and it had all the same syptoms as the more serious stuff. (gee, I wish I could take my own advice!) on that note---take care

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Old 08-13-2008, 08:56 AM #15 (permalink)
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Speaking of C-diff Make sure you eat yogurt with the Doxycycline Clint or take the pill form found in the health food store '
Very important when your on antibiotic for a long time,

pat
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