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Old 09-13-2010, 11:19 AM   #1 (permalink)
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Default Why ALS and not Lyme?

What is the deciding factor between diagnosing ALS and Lyme? My neuro says ALS.

I have muscle atrophy and arm weakness, but can't that be caused by Lyme as well? I also have an abnormal EMG showing nerve damage, but Lyme also does that.

I've never tested positive for Lyme but am responding to ceftriaxone. Does that mean I don't have ALS?

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Old 09-19-2010, 03:11 PM   #2 (permalink)
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Default Re: Why ALS and not Lyme?

Hi,

I don't post too much anymore but of course being that I was diagnosed with Lyme's disease and having an abnormal EMG this thread caught my eye. I wanted to shed a little light on this subject of Lyme and ALS. I've been seeing one of the leading neuro diagnostic neurologists in the country for the last 7months since my crazy story began. You can read back on my posts and updates for my story.

What I learned about ALS and Lyme's disease over the last few months is that in Lyme's disease it can cause a mononeuritis multiplex of which you can google on the internet for the information. It gives a very similar "dirty" EMG and can progress in the same aspect as ALS being that it can cause total paralysis and death.

There are two distinct differentials in deciding on a diagnosis of multiplex and ALS and even then the lines are very blurry when handing out the diagnosis of one or the other. Dr. G told me that the reason she would not be diagnosing me with ALS even though I had denervation, fibs, and giant mups..all that jazz..is bc for one I had a positive Lyme titer that was very high and also a high EBV titer. Secondly, she said I did not show any denervation in my paraspinal muscles at all.

I guess what I am trying to say in summary is that Lyme's does not cause a dirty emg but if it has caused a mononeuritis multiplex that will show dirty. If you are responding to Rocephin, you would not be seeing instant improvement in weakness or cramps etc that has to do with the muscle denervation. However, you would see a change in your speech possibly, in your reflexes, basically anything that would be an UMN symptom bc Lyme's invades the central nervous system and instant improvement due to treatment would be feasible. You wont see any instant symptom relief due to LMN damage only bc when the multiplex sets in, it is there and will take at least 6 months or more from the eradication of the Lyme's to begin to heal.

All in all, if you have Lyme's and a multiplex then you should start seeing improvements in your UMN stuff and then in 6 or more months you should have another EMG to check for active denervation in the affected areas. I must add that not all people recover from a multiplex but most do within a year or so. I would say a year from now if you still have active denervation and you see any progression in UMN symptoms ALS is probably the correct but if you dont then you had a multiplex of some sort.

Hope this helps..its taken me so many questions and research to get where I understand this Lyme/ALS question but at this point there is no research that links Lyme to causing ALS. Lastly, I want to make it clear that Rocephin is used to kill Lyme bacteria and is used in ALS trials because of its ability to stimulate natural glutamate blockers in your body which is theorized to cause oxidative stress which kills motor neurons. This is also why trials are being done with high doses of glutathione bc of its ability to detoxify as to alleviate oxidative stress.

If you have any questions..I have a wealth of knowledge on this subject. I'm an open book and a dirty fibber
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Old 09-30-2010, 10:53 PM   #3 (permalink)
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Default Re: Why ALS and not Lyme?

I'm afraid I have both Lyme and ALS. So many of my Lyme symptoms have improved with ceftriaxone but my shoulder atrophy has not. Maybe if I cure the Lyme, the ALS will stop?
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Old 10-01-2010, 10:49 PM   #4 (permalink)
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Default Re: Why ALS and not Lyme?

I never had pain in my arms, just progressive weakness. I believe mononeuritis multiplex starts with pain?
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Old 10-02-2010, 06:17 AM   #5 (permalink)
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Default Re: Why ALS and not Lyme?

Sometimes, in advanced cases, of Lyme Disease there is damage that has been done by the disease that is unrecoverable. For example, if the atrophy to your shoulder is as a result of an active infection then your shoulder may remain as it currently is or it may take a long time to repair. A late stage Lyme disease infection can take a long time to resolve itself. Lyme disease has a zillion symptoms. It takes patience.

I cannot imagine a doctor at this point even considering that you have ALS unless your body begins to deteriorate quickly despite the antibiotics.
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Old 10-03-2010, 08:44 PM   #6 (permalink)
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Default Re: Why ALS and not Lyme?

I can't say my body has deteriorated since starting the ceftriaxone but the shoulder atrophy has not improved. My leg strength has returned but not the muscle mass, of course I am 50 now not 25,

I know I have numerous coinfections that need to be address besides the Lyme. It will probably take years of antibiotics. I just hope I don't have ALS as well.
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Old 10-03-2010, 09:26 PM   #7 (permalink)
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Default Re: Why ALS and not Lyme?

Ensure that you are taking good probiotics while you are the antibiotics. Some Swedish studies are showing that probiotics are also beneficial in many autoimmune conditions. You can't go wrong by adding probiotics to your daily regimen. Hubby with CIDP has been taking them religiously for nearly a year as many feel that CIDP, which is autoimmune, was triggered by some sort of infection in the body. Now they are saying that probiotics affect the T cell response.
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Old 10-05-2010, 09:28 PM   #8 (permalink)
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Default Re: Why ALS and not Lyme?

About the pain thing with multiplex....The only pain I started with was mysterious lower back pain that was ridiculous to the point I would be immobile after I taught my cheerleading classes. None of my neuros considered this in the differentials when I was in the diagnosis process.

My ALS doctor asked about back pain and I said ridiculous and she put two and two together. But no pain in my limbs where there is denervation. Since my two rounds of Rocephin I no longer have the extreme back pain.

Again a lyme infection doesnt cause atrophy...a multiplex secondary to Lyme's causes the denervation which in turn causes atrophy. If you have a multiplex, when your muscles renervate as best as possible you may see some improvement in atrophy but I must include that most atrophy will not improve even if you cure the Lymes and you start to renervate without further denervation.

A true Lyme infection will not take years to cure. I was only on Rocephin for 2 months and I've had active lyme knowingly for 2 years and I contracted it over 7 years ago at least.

I hate to say it but in your case...you are like me.. a wait and see situation. It sucks but 6 months another EMG will shed light. And if you are like me...they will do a new clinical exam and if that has improved they will have to take back the diagnosis of ALS. I improved over 6 months so they took away the threat of ALS as my differential and even took away my multiplex diagnosis.

Good Luck with everything...and yes probiotics are key. My fungal infections got way out of hand. My ALS doc prescribed me so much diflucan bc I was actually starting to have Bulbar symptoms with my speech and swallowing just due to yeast in my mouth and throat. Yuck! All that finally cleared after 4 months but had I taken pros I'd never had those problems.

Much love and luck..if ya need me I'm here.

Kel Bel
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Old 10-06-2010, 10:45 PM   #9 (permalink)
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Default Re: Why ALS and not Lyme?

Laurel, what probiotics do you recommend? I get sick on some of the pill forms, I think its the gelcap coating, gives me horrible stomach pain. I've just been drinking Kefir and it works great but I'm getting really FAT!
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