ALS and Lymes Disease

[jakaspiro]

Hi Everyone,
We're new to the forum and learning so much from reading the posts. Right now my husband has suspected ALS because of Lower Motor Nueron Disease and having ruled out most other possibilities. We have been seen by the ALS clinic at Johns Hopkins Clinic in Baltimore. They also believe its begun to affect his upper motor functions. He has seen a difference in the past few months as well. In the meantime many of our well meaning friends keep insisting its Lyme disease and encourage us to pursue the testing for that. Our nurse practitioner at Hopkins said she has not see Lyme show itself like what she is seeing with my husbands weakness, dropped foot, etc............Has anyone heard of someone who was misdiagnosed with ALS and in fact had Lyme's disease? Doctors are not very open to the idea. We don't want to leave any stone unturned but also don't want to waste our time pursuing a false hope. Any insight would be appreciated.

Thanks,

Kathy

 

[paleshia]

I had the lyme titer done because , well, what's another vile of blood. It came back normal, like all the other blood work. Get it done, so you don't have to wonder about it, and gee I hope yours comes back positive. I know, who would ever think you would wish for a bad test result. I hoped for a bad MRi, got that, but alas, still diagnosed with ALS.

take care, jen

 

[SavoringLife]

Hi Kathy,

Your story sounds soooo similar to ours. We live in Connecticut (the epicenter of Lyme Disease, it seems) so we also had emphatic suggestions to pursue Lyme. As someone mentioned above, for peace of mind we had several different Lyme & tick-disease tests performed multiple times, some at our own expense. These tests included: Western Blot & Elisa (sp?) tests at least 3 different times by both Quest Diagnostics & Igenex, as well as a spinal tap to analyze the CSF for the presence of the Lyme anti-body. None came out postive for Lyme but we did get the peace of mind that we were looking for.

BTW...we have been attending the Johns Hopkins clinic since February 2009 and are very happy there.

Best of luck to you & your husband. You are in the right place on these forums as you go through this discovery process. I remember well those days last year when we were also searching for a diagnosis -- we got lots of great support and information here.

 

[shannon1966]

I knew 2 guys diagnosed with ALS and lyme's. There are no guarantees that even if you have lyme's that you won't still have ALS.

I know, I'm a ray of sunshine, yeah right!

 

[Zaphoon]

Just for sanity's sake, I'd go ahead and get the lymes test done. At least you'd have an answer to that question and could put it to bed.

 

[kelly]

My husband also has Lyme disease and ALS. We were so hopeful at the beginning that treating with IV antibiotics things would clear up. Unfortunately, now we battle ALS. It is odd that so many people with ALS test positive for Lymes disease.

 

[kedevlin23]

My dad's neurologists at Strong Memorial have finally elimated everything else (parks, msa, etc) to come to the conclusion he has ALS.
Tonight my Mom talked to me about some link between ALS and Lymes. The normal blood test came out negative for Lymes, but now they want to have a special test done, because some people don't produce antibodies to fight the Lymes. I don't remember the name of the test.
When they asked his Neurologist about this additonal testing for Lymes, he really downplayed the whole thing - I believe there is something to be said about his response, but I also believe that you should explore any options left on the table with this disease, which is what my Dad is choosing to do as well...good luck to you.

 

[paleshia]

good golly, just reread my post! i would opt for lyme over als, never even thinking of both...yikes. I take it all back, I really want none of it...no lyme, no MS, and certainly no Als......one can dream, right?

 

[jakaspiro]

All very helpful, we met with our General Doctor and will do one more round of tests for Lyme, then put that to rest. We want to get
a diagnosis one way or the other so we could possibly get into a trial. Or start taking the FDA drug for ALS. I cant' remember the name of it. Has anyone had terrible side affects from it? I really appreciate your all taking the time to respond to my post. Kind of confirmed what we've been thinking. We will rule it out and ease our mind, then we will move on. I have not really found anyone misdiagnosed with ALS who did not have ALS but had Lymes. I'm so surprised that many test positive for Lyme who have ALS. What were your symtoms Kelly when your husband thought he had Lymes?

Thanks again for your posts, its very wonderful having a place to ask questions during this process

Kathy

 

[kedevlin23]

Or start taking the FDA drug for ALS. I cant' remember the name of it. Has anyone had terrible side affects from it?

My dad is now taking Riultek (sp?) - he's had no side effects from it. is that the drug you are talking about?

I'm so surprised that many test positive for Lyme who have ALS.

I am too - makes you wonder if there is a link...

 

[LauraW]

Yeah.....we have a dr in our area who diagnoses everyone with Lymes and I used to work in a Health Food store and everyone who found out about Mom would tell me it was Lyme's. I went on a hunt...tons of research and testing...prayed that it was Lyme's. It is not.

 

[kelly]

Hi Mary,
My hubby tested positive for Lyme Disease and Q Fever (another tick born disease). He had severe fatigue..fevers...unexplained rashes. Unfortunately, the slurred speech..and muscle weakness was soon to follow. He still was treated for 3 months with iv antibiotics (rocefin). Did not seem to slow anything down..just make him feel horrible. Thinking of you.

 

[Al]

If you type in Rilutek in the search above there's lots of information about it. It can also be called Riluzole.

AL

 

[RoadKill]

I live near where you live. Those mutant deer we see splattered on the road might certainly carry ticks with Lyme. Unfortunately though, I have been tested for Lyme and the test results all three times (by my GP, by a Hopkins neurologist, and by an NIH neurologist) all came back negative. I never asked to be tested. Doctors just like to take my blood.

Seriously, he ought to be tested at least once for it.

I sure would like to trade in this diagnosis for something else.