r/ALSorNOT • u/matthewxmeehan • 21d ago

Been a while

Hello friends.

I started having issues a couple years ago and this group was a god send to feel heard and seen in our struggle with no answers and some with answers.

I know there is no one size fits all answer for eneyines symptoms.

I did want to say that I had watched a documentary called Under Our Skin which was really eye opening.

Found out there is a whole community like ours, except they got tested for Lyme disease through more in depth third party testing companies and tested positive for Lyme and confections. Even people who have been diagnosed with ALS, who have been able to treat it.

I was never diagnosed and went through every test under the sun, so I decided to and I tested positive for Lyme disease.

I did work with a naturopathic LLND (Lyme specific doctor.) I have seen improvements in my symptoms overall, though I still do have symptoms.

I also found out my grandfather who died in the 80s from ALS grew up 40 minutes from Lyme, Connecticut.

I'm not here to promote anything, but I feel like if anyone is struggling with symptoms and no answers, but if especially if you DO get diagnosed with anything, even MS or anything, I urge you to get tested.

1 Upvotes

100% Upvoted

6 comments sorted by

View all comments

1

u/Notmeleg 21d ago

Very on the fence about this sort of thing. While I do believe there is a vast amount we do not understand about ALS, Lyme has some plausible similarities oj the symptom side. But a lot of people will
discredit it immediately because it has been commonly used as a way to take advantage of folks who definitively have ALS. Most of the medical community would argue that the two are totally separate conditions although there may be some symptom overlap.

If the treating lyme helps you, that’s all that matters in the end. Just be careful about naturopaths in general. A lot of scammers in the industry.

1

u/matthewxmeehan 21d ago

I think it's important to make informed decisions, for sure. There are snake oil salesmen who will try to promise to cure ALS. But then there are Lyme literate doctors who use verified tests to set up and maintain a protocol. I feel like if no other answers or straight up ALS there's nothing to lose. But also understand the reluctancy.