Closed Thread
 
LinkBack Thread Tools Search this Thread
Old 11-07-2010, 10:26 PM #1 (permalink)
m12414's Avatar
New Member
 
Join Date: 2010
Posts: 42
m12414 is on a distinguished road
m12414 m12414 is offline
New Member
m12414's Avatar
Join Date: 2010
City: lyme
State: ct
Country: US
Diagnosed: 02/2010
Posts: 42
m12414 is on a distinguished road
Default Lyme misdiagnosed as ALS

Lyme as a Motor Neuron disease

This is an interesting case. I wish I was so lucky!
m12414 is offline  
Old 11-07-2010, 11:20 PM #2 (permalink)
ruth9579's Avatar
New Member (Say Hi)
 
Join Date: 2009
Posts: 3
ruth9579 is on a distinguished road
ruth9579 ruth9579 is offline
New Member (Say Hi)
ruth9579's Avatar
Join Date: 2009
City: halifax
State: ma.
Country: US
Diagnosed: 07/2009
Posts: 3
ruth9579 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

if only it could be for all
ruth9579 is offline  
Old 11-07-2010, 11:49 PM #3 (permalink)
heidi12257's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 6
heidi12257 is on a distinguished road
heidi12257 heidi12257 is offline
New Member (Say Hi)
heidi12257's Avatar
Join Date: 2010
City: Campbell River
State: BC
Country: CA
Diagnosed: 04/2010
Posts: 6
heidi12257 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

I've heard of two people: one diagnosed several years ago with ALS who turned out to have Lyme disease and who is now almost fully recovered and another woman who lives in my town who was diagnosed with ALS 5 years ago by the same neurologist and clinic as I was just 6 months ago. This woman has tested positive for Lyme disease at 3 separate clinics (I guess it can be very difficult to detect). I'm going to meet her this weekend for the first time - she is now on a course of antibiotics. I'll be seeing my neurologist next week and discussing he issue at length... I've never hoped for an illness before, but like all of us, I'm looking for an alternative to ALS!

Cheers all - I'll keep you posted!
Heidi
heidi12257 is offline  
Old 11-08-2010, 06:28 AM #4 (permalink)
juliette11095's Avatar
New Member
 
Join Date: 2010
Posts: 18
juliette11095 is on a distinguished road
juliette11095 juliette11095 is offline
New Member
juliette11095's Avatar
Join Date: 2010
City: Leaskdale
State: ON
Country: CA
Diagnosed: 08/2000
Posts: 18
juliette11095 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

Good luck to you Heidi. My Tom has been deteriorating for 10 years but is now on the meds for leptospirosis, a mouse disease the lyme doctor found AND meds for Lyme, (can't get a positive on lyme) and I think is now too weak to have started the antibiotics. They are making him very sick.
Keep your strength up, eat lots because it will go out as fast as you can put it in and THINK POSITIVE. This will be your body's best armour.
juliette11095 is offline  
Old 11-08-2010, 04:29 PM #5 (permalink)
mike12803's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 4
mike12803 is on a distinguished road
mike12803 mike12803 is offline
New Member (Say Hi)
mike12803's Avatar
Join Date: 2010
City: mississauga
State: on
Country: CA
Posts: 4
mike12803 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

i;ve heard a few cases too]
sadly very few improve
mike12803 is offline  
Old 11-08-2010, 08:35 PM #6 (permalink)
m12414's Avatar
New Member
 
Join Date: 2010
Posts: 42
m12414 is on a distinguished road
m12414 m12414 is offline
New Member
m12414's Avatar
Join Date: 2010
City: lyme
State: ct
Country: US
Diagnosed: 02/2010
Posts: 42
m12414 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

ceftriaxone (rocephin) seems to be the drug of choice for many lyme patients. it is also being tested for als. I have been on it for 6 months and have noticed a big improvement in my lyme symptoms. not so sure about the als progression, i'm getting weaker in some areas.
m12414 is offline  
Old 11-09-2010, 08:17 AM #7 (permalink)
mike12803's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 4
mike12803 is on a distinguished road
mike12803 mike12803 is offline
New Member (Say Hi)
mike12803's Avatar
Join Date: 2010
City: mississauga
State: on
Country: CA
Posts: 4
mike12803 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

abx took away my joint pain, stopped m7y bowel incontinence and reduced my brain lesions by half
als sx worse
good luck
mike12803 is offline  
Old 12-19-2010, 02:17 PM #8 (permalink)
maryam13144's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 4
maryam13144 is on a distinguished road
maryam13144 maryam13144 is offline
New Member (Say Hi)
maryam13144's Avatar
Join Date: 2010
City: Lahore
State: Punjab
Country: Pak
Diagnosed: 07/2009
Posts: 4
maryam13144 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

Hi i m maryam from pakistan.my mother 53 yrs old diagnosd ALS in 2009.in 2008 july 1st symptom was foot drop in rt leg weakness then progresd to whole body in 2 yrs.now her condition is she is not able to walk,no power in whole body,cant talk,swallow wid gr8 difficulty,rapid breathing,unable to sit.having muscle wasting in whole body.dripling of saliva,choking on liquids,muscle jumping in whole body.swollen glands,unexplaind fever,sore throad,headache,neck pain and craks and so much pain in both arms.taking pain killers 4 last 3 months but not responsive.now i want to know in wat category she falls.i also want to know any medicine 4 hr arm pain.
maryam13144 is offline  
Old 12-22-2010, 12:27 AM #9 (permalink)
heidi12257's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 6
heidi12257 is on a distinguished road
heidi12257 heidi12257 is offline
New Member (Say Hi)
heidi12257's Avatar
Join Date: 2010
City: Campbell River
State: BC
Country: CA
Diagnosed: 04/2010
Posts: 6
heidi12257 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

Hi Maryam... Lyme disease is different than ALS in many ways, but oddly, most people with ALS (and MS and Parkinson's disease too) test positive for Lyme. Has you mother been tested for Lyme disease? If so, there are treatments - with results better in the early stages. It's difficult to diagnose and can imitate other illnesses, but until you know what you are up against, there isn't much you can do. I have some arm pain too, but only when they are stressed in the shoulder joints - sleeping on them hurts as does putting my arms through the sleeves of a jacket. Your mother's pain sounds much worse and I don't know what to tell you, other than to see your doctor or Ayurvedic practitioner.

My best wishes are with you and your mother. She is fortunate to have you with her - your love and care for her shines through your anguish.
Be strong for her, and take care of yourself too.
Heidi
heidi12257 is offline  
Old 12-22-2010, 09:56 AM #10 (permalink)
michelle13070's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 2
michelle13070 is on a distinguished road
michelle13070 michelle13070 is offline
New Member (Say Hi)
michelle13070's Avatar
Join Date: 2010
City: Gainesville
State: FL
Country: US
Posts: 2
michelle13070 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

Good luck on that Chameleon! Hoping for the best for you.....
michelle13070 is offline  
Old 12-22-2010, 01:00 PM #11 (permalink)
maryam13144's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 4
maryam13144 is on a distinguished road
maryam13144 maryam13144 is offline
New Member (Say Hi)
maryam13144's Avatar
Join Date: 2010
City: Lahore
State: Punjab
Country: Pak
Diagnosed: 07/2009
Posts: 4
maryam13144 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

thanx alot heidi for ur love and care.i want to know ur complete symptoms and ur treatment can u tell me which u r getting?
maryam13144 is offline  
Old 12-28-2010, 07:06 PM #12 (permalink)
heidi12257's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 6
heidi12257 is on a distinguished road
heidi12257 heidi12257 is offline
New Member (Say Hi)
heidi12257's Avatar
Join Date: 2010
City: Campbell River
State: BC
Country: CA
Diagnosed: 04/2010
Posts: 6
heidi12257 is on a distinguished road
Default Re: Lyme misdiagnosed as ALS

Hi Maryam-

Rather than telling you what I am taking, I suggest that you see a Lyme specialist....it's tricky to diagnose from what I understand and you can do yourself more harm than good by trying to take supplements that you think might help.

Emotional trauma, heavy metals and microbial pathogens ALL need to be dealt with, and treated in concert. Finding a "Lyme-literate" doctor or naturopath will be the first step to take. Good luck to you...!

Cheers-
Heidi
heidi12257 is offline  
Closed Thread

Tags
als, lyme, motor neuron disease


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Lyme Disease misdiagnosed as ALS liz25920 Lyme Disease Diagnosis 16 03-20-2016 09:17 PM
Misdiagnosed, it was Lyme disease all along lauren19093 Lyme Disease Diagnosis 6 10-25-2013 04:10 AM

 

All times are GMT -5. The time now is 11:46 AM.

About Us

"Our forum consists of individuals working together to provide Lyme help, exchange information, provide moral support, share information and helpful tips. Together we learn to cope with Lyme, make friends, and help one another live healthier and happier lives in spite of Lyme disease."

 

Copyright © 2016