Has any one else had lyme disease followed by ALS?

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beth12834

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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.
 
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.
 
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.
 
I can't believe I have ALS either. I am considering the ceftriaxone.
How are you with the IV is it annoying?
 
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.
 
Yes my husband was treated for Lyme and Q Fever (another tick born disease). Unfortunately, it is now just 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.
 
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....
 
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.
 
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.
 
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!
 
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.
 
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