Closed Thread
 
LinkBack Thread Tools Search this Thread
Old 11-16-2010, 08:46 PM #1 (permalink)
beth12834's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 4
beth12834 is on a distinguished road
beth12834 beth12834 is offline
New Member (Say Hi)
beth12834's Avatar
Join Date: 2010
City: Fernandina Beach
State: Florida
Country: US
Posts: 4
beth12834 is on a distinguished road
Question Has any one else had lyme disease followed by ALS?

In 2003-2004 I had lyme disease. I have heard from another person whose brother died of ALS that he had lyme prior to ALS. I do not have lyme now. I do have a new diagnosis of ALS.
beth12834 is offline  
Old 11-16-2010, 09:52 PM #2 (permalink)
joel771's Avatar
Moderator
 
Join Date: 2006
Posts: 2
joel771 is on a distinguished road
joel771 joel771 is offline
Moderator
joel771's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Posts: 2
joel771 is on a distinguished road
Default Re: Has any one else had lyme disease followed by ALS?

Welcome to the forum. Sorry about your diagnosis. If you scroll to the bottom of this page there are other posts that pertain to your question.
joel771 is offline  
Old 11-21-2010, 05:34 PM #3 (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: Has any one else had lyme disease followed by ALS?

Lyme is very difficult to pick up in blood tests at this stage. I suggest you see a doctor specializing in treating lyme disease. I believe many als cases are caused by lyme. Lymnet.org is a very useful website.

I was diagnosed with als in march and lyme in april. I am currently on iv ceftriaxone and feeling much better. My arm and leg weakness is better but my neck has gotten worse. Abx don't work for everyone but its worth a try.
m12414 is offline  
Old 12-04-2010, 11:43 AM #4 (permalink)
beth12834's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 4
beth12834 is on a distinguished road
beth12834 beth12834 is offline
New Member (Say Hi)
beth12834's Avatar
Join Date: 2010
City: Fernandina Beach
State: Florida
Country: US
Posts: 4
beth12834 is on a distinguished road
Default Re: Has any one else had lyme disease followed by ALS?

I can't believe I have ALS either. I am considering the ceftriaxone.
How are you with the IV is it annoying?
beth12834 is offline  
Old 12-11-2010, 09:34 PM #5 (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: Has any one else had lyme disease followed by ALS?

Try the ceftriaxone. It has helped me alot. I feel it has slowed, but not totally stopped, my weakness progression. I also am starting on other antibiotics to kill lyme and coinfections while staying on the ceftriaxone. The picc line is hard to get used to but now Ive adjusted and its well worth it.
m12414 is offline  
Old 12-12-2010, 08:04 AM #6 (permalink)
don12203's Avatar
New Member (Say Hi)
 
Join Date: 2010
Posts: 4
don12203 is on a distinguished road
don12203 don12203 is offline
New Member (Say Hi)
don12203's Avatar
Join Date: 2010
City: Scarborough
State: Ontario
Country: CA
Diagnosed: 11/2007
Posts: 4
don12203 is on a distinguished road
Default Re: Has any one else had lyme disease followed by ALS?

Lymnet.org ? You left out the e .. Takes to a different site... Lymenet.org
don12203 is offline  
Old 02-24-2011, 10:31 PM #7 (permalink)
karen13789's Avatar
New Member (Say Hi)
 
Join Date: 2011
Posts: 6
karen13789 is an unknown quantity at this point
karen13789 karen13789 is offline
New Member (Say Hi)
karen13789's Avatar
Join Date: 2011
City: Brooklyn
State: NY
Country: US
Posts: 6
karen13789 is an unknown quantity at this point
Default Re: Has any one else had lyme disease followed by ALS?

Yes my husband.
karen13789 is offline  
Old 02-24-2011, 10:32 PM #8 (permalink)
1070's Avatar
New Member
 
Join Date: 2006
Posts: 11
1070 is on a distinguished road
1070 1070 is offline
New Member
1070's Avatar
Join Date: 2006
City: saratoga springs
State: ny
Country: US
Posts: 11
1070 is on a distinguished road
Default Re: Has any one else had lyme disease followed by ALS?

Yes my husband was treated for Lyme and Q Fever (another tick born disease). Unfortunately, it is now just ALS.
1070 is offline  
Old 02-24-2011, 10:37 PM #9 (permalink)
karen13789's Avatar
New Member (Say Hi)
 
Join Date: 2011
Posts: 6
karen13789 is an unknown quantity at this point
karen13789 karen13789 is offline
New Member (Say Hi)
karen13789's Avatar
Join Date: 2011
City: Brooklyn
State: NY
Country: US
Posts: 6
karen13789 is an unknown quantity at this point
Default Re: Has any one else had lyme disease followed by ALS?

Please don't concentrate on the lyme, get the support you need with ALS, although in our case it was very lacking. Doctors don't really understand both diseases and they are both debilitating. My husband focused on the hope of being cured from lyme and didn't get the help or support or even the proper diagnosis for ALS. His autopsy diagnosed ALS. Get the support and help you need. I wish you well.
karen13789 is offline  
Old 02-24-2011, 10:41 PM #10 (permalink)
1070's Avatar
New Member
 
Join Date: 2006
Posts: 11
1070 is on a distinguished road
1070 1070 is offline
New Member
1070's Avatar
Join Date: 2006
City: saratoga springs
State: ny
Country: US
Posts: 11
1070 is on a distinguished road
Default Re: Has any one else had lyme disease followed by ALS?

I totally agree Kassaj,
We wasted so much time pursuing the Lyme disease when we were also told ALS. Of course my hubby wanted to focus on the lesser of two evils. We should have been traveling with our kiddos..voice banking....the list goes on. We also spent thousands...I mean thousands of dollars on lyme treatments not covered by insurance. I think it is important to plan accordingly...either way....
1070 is offline  
Old 02-24-2011, 10:53 PM #11 (permalink)
karen13789's Avatar
New Member (Say Hi)
 
Join Date: 2011
Posts: 6
karen13789 is an unknown quantity at this point
karen13789 karen13789 is offline
New Member (Say Hi)
karen13789's Avatar
Join Date: 2011
City: Brooklyn
State: NY
Country: US
Posts: 6
karen13789 is an unknown quantity at this point
Default Re: Has any one else had lyme disease followed by ALS?

Kelly,
I do believe there is a link, but medicine is not advanced enough to join the dots and we did the same, we went to countless specialists all with long gaps in between appointments and we also went out of insurance spending lots of money. My man was basically left to rot. I would love to see support groups in place to help this awful suffering. Nurses that help to follow the patients from specialist to specialist, neck braces designed the list is endless. Much love to your family.
karen13789 is offline  
Old 02-25-2011, 05:38 PM #12 (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: Has any one else had lyme disease followed by ALS?

Well, I hope I am not wasting my time with Lyme but I am still trying antibiotics. It has been a year since my ALS diagnosis and I'm alittle weaker but not much. I could just have a slow progression but I'd like to think the meds are working.

I just lost my picc line due to a staph infection. I now have gastritis and am treating that. I hope to go back on ceftriaxone soon. I feel so fatigued without it and the shaking/muscle cramps have resumed.
m12414 is offline  
Old 02-26-2011, 08:18 AM #13 (permalink)
1070's Avatar
New Member
 
Join Date: 2006
Posts: 11
1070 is on a distinguished road
1070 1070 is offline
New Member
1070's Avatar
Join Date: 2006
City: saratoga springs
State: ny
Country: US
Posts: 11
1070 is on a distinguished road
Default Re: Has any one else had lyme disease followed by ALS?

NOT ALS....I am hoping with every bone in my body that the antibiotics work. I went back and forth with my thought process...as long as it is not doing more damage then good....and you are not breaking the bank...keep it up! Hope is a powerful tool!
1070 is offline  
Old 03-01-2011, 11:19 PM #14 (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: Has any one else had lyme disease followed by ALS?

I've read that some ALS lyme survivors were treated with ceftriaxone and bicillan shots. They also were treated for babesisios with mepron and zithromax. Ledum was used as a supplement.

Oral abx for lyme seemed to speed up the ALS.
m12414 is offline  
Closed Thread

Tags
als, als?, brother, diagnosis, lyme, lyme disease, new diagnosis


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/als emrah20371 About Lyme Disease 5 01-18-2013 04:44 PM
Lyme disease turning into ALS emrah20371 About Lyme Disease 5 01-18-2013 04:44 PM
Documentary on Lyme disease jerry13288 About Lyme Disease 4 07-11-2011 04:28 PM
lyme disease precipitates other disease beth12834 About Lyme Disease 13 03-01-2011 11:19 PM
Anyone have ALS and Lyme disease? m12414 Living with Lyme Disease 3 10-31-2010 10:15 PM
Could this by Lyme disease? m12414 Do I Have Lyme Disease? 8 10-29-2010 10:45 PM
Could Lyme disease trigger ALS? helen12082 About Lyme Disease 1 08-29-2010 11:34 AM
Treated for Lyme disease beverly10065 Living with Lyme Disease 20 04-06-2010 03:02 PM
DX'ed with Lyme Disease, still fear ALS 5956 About Lyme Disease 15 08-13-2008 08:13 AM
Lyme Disease 206 About Lyme Disease 10 07-28-2005 03:18 PM

 

All times are GMT -5. The time now is 07:51 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