posted
Has anyone had muscle weakness and atrophy that has been cured? I was dxd with ALS but I'm hoping its lyme disease.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had extreme, full-body muscle weakness and when I got good lyme treatment it all went away.
I completed my treatment over 5 years ago and I am still symptom free, enjoying my life.
I encouraged a person with an ALS diagnosis to go to a lyme doctor. He tested positive for lyme, babesiosis, and bartonella. His symptoms improved with lyme treatment.
He could walk normally again, use his hands normally again (could open jars, etc.) and got his voice back.
You NEVER get back function lost to ALS because it is physically impossible to do so. The myelin sheath on the nerves is gone.
Many people with the ALS diagnosis really have lyme disease. Lyme can be treated and cured.
Now, they are saying that Lou Gehrig didn't even have ALS. The ALS diagnosis is in a state of flux right now and it may turn out to be an infection that can be treated by antibiotics. So, please don't despair.
Please get to the very best lyme doctor you can afford.
The guy I knew with the ALS diagnosis tried to kill himself after being given that diagnosis. Good thing he didn't succeed.
Being from Connecticut, I won't be surprised when you find out you really have lyme disease also. So glad you found this board!!
Posts: 9931 | From Maryland | Registered: Dec 2007
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I recently developed this after my first round of IV. For ex., I was holding onto the steering wheel and my arms just flopped down. I describe them as being noodles. Profound weakness, but in a weird way. It hit me after my round with flagyl. This is a new symptom for me. I have always had the leg weakness. In addition, my neck feels like it cannot hold up my head. My head sometimes wants to flop to the side. I asked my LLMD last week, could I have ALS??? It was starting to freak me out. He said no and tried to reassure me it is just from lyme. I believe this is your case too. Hopefully you have found a top-notch lyme doctor. This whole thing is terrifying.
Posts: 618 | From NC | Registered: Oct 2009
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Last Spring at the CALDA conference in No. CA, I heard Dr. Martz speak. He was diagnosed with ALS, and was severely disabled when he discovered he actually had Lyme. After treatment, he is doing much better.
I have not been tested for ALS, but I do have muscle atrophy especially in arms and shoulders, and my neck muscles are often too tired to hold up my head anymore. Right now I go on faith that it is Lyme (and coinfections) and will see where I am after treatment. Already, after a year on Babesia treatment with some overlapping Lyme meds, the neck weakness is much improved.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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That's so good to hear. I'm going to an osteopath doctor in a few days. I'm not telling him about the ALS dx, the last neurosurgeon I went to just concentrated on that information and didn't look much further.
I had whiplash from a car accident 30 years ago and have had neck pain periodically ever since. I wonder if the Lyme disease has attacked already damaged muscles?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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I've wondered about that too, because I was in a head-on collision many years ago and my neck has been a problem ever since.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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I have the same issues with my arms feeling floppy. And I was ALSO in a car wreck years ago! I have been wondering how much of my neck pain is actually the damage from the MVA or the Lyme!
Posts: 41 | From Springdale Arkansas | Registered: Aug 2010
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