Misdiagnosis possible? Anyone looked into Lyme Disease?

[missbelle]

Guys, I've been reading a TON of articles about how so many people have been misdiagnosed with ALS but actually had Lyme Disease! Does anyone have any experience with this? Does anyone in Ontario know where to get tested for it properly? Apparently 50% of people bitten by a tick don't even remember, and Lyme is on the rise in Ontario. I'm probably in denial and hanging on to false hopes here but this possibility has retained some of my sanity and is a good distraction, if nothing else, from my mom's recent Bulbar Onset ALS diagnosis. Any thoughts are welcome!

 

[Nikki J]

There is a LOT of discussion about this here.
The ALS is Lyme is controversial and a lot of it is a scam. Is Lyme considered a mimic by many? Yes. My. Neurologist tested me for Lyme through a standard lab not the " special lab"

A cautionary tale. A former member here first started the Deanna protocol and touted its benefits, how much it helped, then he joined the ALS is Lyme ( not chronicled here I followed him elsewhere) reported how treatment was working he was herxing etc etc. then went quiet. He died 18 months after diagnosis. If you look on the Deanna site there was ( and probably still is )a lyme section. You will note how the members gradually dropped away. If it had worked really they would have been posting about their recovery.

I am sorry. There is another thread going about hope/ false hope. You are new to this. I don't want to crush hope but your mom does not need to pursue false hopes either. If she has a good neuromuscular doctor you trust work with them. If not yet, concentrate on finding one

 

[missbelle]

Okay, thanks.

 

[affected]

hon, it may be worth seeing a counsellor and really talking your feelings through.

I know the diagnosis is such a shock, truly, I've been there. I still remember it so deeply, and it was my husband, so young, so awful.

Lyme truly does not affect a person like bulbar onset ALS. There are always some things that can sound similar, but they are not the same disease at all.

Please be careful shouting that out on other threads to others who are just hitting the shock of diagnosis. This is such an awful time, the shock is so deep. Like Nikki I don't want to crush you, but I don't want you to follow false paths only to have to face the shock again. hugs

 

[GregK]

Ms. Belle, also be aware of chelation therapy and stem cell clinics (NOT stem cell trials, but places like Stem Cell of America or Chinese clinics).

Currently, sadly, Riluzole is the sole treatment available.

If you use the Search feature you will find posts on all of these topics.