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Newbie...Late stage lyme, muscle atrophy, progressive symptoms , ALS?

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Posted 6/7/2014 1:00 PM (GMT -5)
Hello All, my LLMD believes I was infected years ago with being reinfected more than once...7 years ago I started with cramping in my legs, followed by weakness in my wrist and ankles...involuntary finger twitching on right hand. Eventually it focused on the left side only and has continued attacking just the left side to include arm, shoulder, neck, tongue and hand weakness. I also have weakness in my left leg. I have muscle atrophy in my neck, shoulder blade and calf all left side...I have twitching as well on the left side and muscle weakness in my diaphragm muscles.

I just started getting twitching on the right side. Some weakness.

I feel like my symptoms are still progressing and I'm currently being treated.

Can anyone relate? I fear ALS, yes I've had EMGs/NCS and the neurologist say no.

I'm new to the site any feedback is appreciated!
Posted 6/7/2014 1:54 PM (GMT -5)
Puzit I am so sorry you had to join us! I did experience weakness but not at the level you describe. Mine was more related to being in excruciating pain. All of my muscles sort of relaxed and my left hand became very weak and I had a neuropathy in it. So sorry you are going through this!
Posted 6/7/2014 2:03 PM (GMT -5)
Thank you Lymebabe! I'm on two meds for nerve damage...thsnks for sharing what you experienced...this is a scary illness!
Posted 6/7/2014 2:23 PM (GMT -5)
Have you tried ALA IVs? They really helped me with the nerve damage. I still have some but much of my left hand neuropathy has resolved.
Posted 6/7/2014 2:33 PM (GMT -5)
How do you know if you actually have nerve damage?
I had Nerve test done a month ago for my left arm/hand...and the doc says all is good...So I'm assuming that means no nerve damage?

Putzit - If your symptoms started 7 years ago...most likely it's not ALS...because it would have progressed to the point by now that you'd have a diagnosis.
How long have you been treating the Lyme disease? And what are you taking?

But I understand your worry - I thought I had either Parkinson's (had tremors on my left hand), or MS, or at one point ALS - weakness, twitches...
How can we not be concerned with these awful symptoms.
Posted 6/7/2014 3:01 PM (GMT -5)
I had an Neuro consult in Jan 2014 to rule out ALS/MS and other nasty stuff. Literally went from normal to not being able to swallow, facial numbness and other horrid nasty stuff. Yep perfectly healthy to not... more to my story but I wont post it all again here. Saw a possible brain infection on my MRI suspected lyme immediately and was diagnosed with bells palsy and inflammation of the cranial nerves. Didn't show up on my blood or tap so my neurologist kicked me to the curb. Found a LLND and was diagnosed with Lyme in April 2014.

I got a second opinion from another Neurologist who said I was ok. Clearly I wasn't. So Id say on the lyme track and you'll be ok.
Posted 6/7/2014 5:44 PM (GMT -5)
Lymebabe: I haven't had any IV's at this point...I know that I will be on the future.

Girlie: I have had clean studies but my both my LLMD and PCP think it's neuropathy even possibly affecting my badder I always feel like I have an UTI but I never do.

Louise74: All my neurologist treat me like I'm crazy...I've only had one that suspected Lyme. I progressively gotten worst and I did have a spat of what I thought was Bells Palsy but the hospital said no...they could see my face wasn't the same as in pictures taken just days before it never went back to normal. I've had so many test but nothing other than EMGs in the last two years.

Thanks for sharing and taking time to help me!
Posted 6/7/2014 6:25 PM (GMT -5)
Hang in there. There are lots of approaches to getting well regardless of the diagnosis. I would focus on lyme, when traditional docs can't help. There are many protocols, herbs, detox strategies,diet changes,supplements to try. Sometimes you just have to listen to your body and go from there.

Example: I noticed with my illness, I'm not able to tolerate meds that I had no problem with in the past. My symptoms brought me to deaths door after taking a few pills here and there. From all accounts, my liver looks fine on paper. A naturopath would tell you that my body is having s hard time processing meds for reasons unknown. Time to detox that liver!! So that is my current strategy in addition to killing the lyme...and we'll see if it helps any. Listen to your body and think outside the box a little.
Posted 6/7/2014 6:26 PM (GMT -5)
Hang in there. There are lots of approaches to getting well regardless of the diagnosis. I would focus on lyme, when traditional docs can't help. There are many protocols, herbs, detox strategies,diet changes,supplements to try. Sometimes you just have to listen to your body and go from there.

Example: I noticed with my illness, I'm not able to tolerate meds that I had no problem with in the past. My symptoms brought me to deaths door after taking a few pills here and there. From all accounts, my liver looks fine on paper. A naturopath would tell you that my body is having s hard time processing meds for reasons unknown. Time to detox that liver!! So that is my current strategy in addition to killing the lyme...and we'll see if it helps any. Listen to your body and think outside the box a little.
Posted 6/7/2014 7:44 PM (GMT -5)
Sorry you are going through this. I understand how you feel. I have twitches, spasms and night tremors. It's been a couple weeks since I have had the night tremors though. I also have pain pretty much everywhere, optic neuritis and erythromelalgia. Let me tell you that last one is a real bummer. Neuropathy in both hands and feet… Lesions on my brain.. The list is too long. I also have a high Mycoplasma count. Negative for literally everything else we have tested for and we have tested for everything. 3 out of 4 neurologists say I don’t have MS. We have tested for Lupus 4 times. I often find myself wondering if all this can really be caused by Lyme. But what can we do? We have to pick something and treat for it I guess. I have to believe IgeneX is correct and hope for the best with treatment. I’ve been in treatment for 3 months with very little results so far, but tomorrow might be better.
Posted 6/7/2014 9:04 PM (GMT -5)
Louise74: I had the same issues with meds one day I could take two days later nope, thought I was dying from them! I'm on a protacal that's been adjusted several times, including supliments and herbs.
Trying to stay positive and focused is hard for me! Thanks again!

Akkami: it's an awful illness, it hard feeling like your going no where with treatment...it makes me feel like it's never going away. It sounds like you too are dealing with a lot. I admit some to which I haven't heard of. I have learned about all these illnesses I've never heard about through all my testing all that end with a negative result...good news yrs but back to knowing nothing again!

Finding no one who symptoms to be like mine...like I don't fit the mold... Hoping you all healing and wellness!
Posted 8/6/2014 6:40 PM (GMT -5)
How you doing puzit31? New here and your story sounded similar to mine
Posted 8/6/2014 6:59 PM (GMT -5)
Otie, can you share some of the things your going through? How long have you been dealing with this? I'm sorry to had to join the site but hope we can help each other out and you find help here!

Puzit
Posted 12/18/2015 1:01 AM (GMT -5)
Otie puzit you guys still around?
Posted 5/13/2018 12:16 PM (GMT -5)
Bump
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