For any young people worrying about Other Diseases

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Please read my previous posts from 2012 and 2013.

I got very very ill in summer 2012. Had lots of neuro probs, bells palsy, giant lymph nodes, spasms, pain, TWITCHING, numbness from legs down, etc. Couldn't walk straight, talk , eat. Lost 15 lbs in a week. Serious night sweats. Rashes. Smell and taste changed. I looked back today at how foolish I must have looked. Reading what I wrote made me cry. Someone even called me "demented", which hurts.

But I actually had Lyme Disease. Lyme can be very debilitating, and can look like many things. It is called the "Great Imitator" I guess for a reason. I actually test positive thru Quest with Borrelia Hermsii too, so who knows If that is a cross reaction to the Lyme.

I had no idea about tick diseases in 2012. My doctor did not test for them since this is not an "endemic" area.

But if you are having lots of issues like I did very suddenly and severely, please check out vector borne illness to rule out. I should have had antibiotics right away, but it took a year to be diagnosed. I'm still having issues even now. I have developed POTS which is very disabling and keeps me bedbound. Its a form of autonomic dysfunction.

So please if you feel like you have ALS, please please check out being tested for these. I wish I had know in the beginning.

The people here try their hardest to help but they cannot diagnose, so if you are very ill and they have ruled out autoimmune and cancer, please have them rule out the slew of infections. quest and labcorp can do them all. I don't want anymore people to end up like me if they have something organic going on. Just because you don't have ALS, please don't think nobody thinks you're crazy. It could be a lot of things, or anxiety. The brain is very powerful. I will hopefully be active on the Lyme and fibro boards here.

Be blessed. Thank you.
 
Re: For any young people worrying about ALS

Good luck with your recovery. Please note I suggested Lyme disease as a possibility not even 8 hours after your first post.
 
Re: For any young people worrying about ALS

And MS. Nikki, you were right on the money. When I had suggested Lyme back then, that doctor thought I was insane. Then I finally had the right testing all thru Quest. Just very depressing and devastating when you're told you're crazy and then see there is really a problem.

Hopefully I can start feeling better soon. Don't know how, but I have to try to.
 
Re: For any young people worrying about ALS

I've been having a lot of those symptoms but my doctor checked for Lyme said it was negative should I see a llmd? Did a llmd diagnose you?
 
Re: For any young people worrying about ALS

My opinion ( and I know you did not ask me) is stay away from " llmd" somehow everyone seems to get a positive test result and ends up taking lots of antibiotics - something that is not without risk.
 
Re: For any young people worrying about ALS

Yea I've heard a lot bad about them to. Its kinda like the whole mercury fillings controversy. I guess you can never really know the truth
 
Thanks. I have had some weird symptoms in the last couple of years :( I sometimes wonder if I could have lyme disease, but the more time I spend on this forum learning about this disease, the more I realize how hard is to get this diagnosed. The worst part is the doctors wanting t cooperate with you :( I needed several tests done... but my new neurologist didn't approve them I feel so fed up and tired... so tired of fighting this hopeless battle...
 
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