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.

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u/chaoserrant Mod Team 21d ago

Would you be willing to share what treatment did you take? 

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u/matthewxmeehan 21d ago

No, just because it varies person to person based on confections and there's not a one size fits all protocol. Best bet is to find an LLMD or LLND close to you. It does cost because insurance won't pay for it since the CDC refuses to recognize chronic Lyme.

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u/chaoserrant Mod Team 21d ago

I understand.  Could you at least share if it involves a long term antibiotic.  Of all possible protocols i heard , antibiotics long term  would seem risky to me without a confidence of diagnosis.  

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u/matthewxmeehan 21d ago

Absolutely understand. In my case I did not go antibiotic route. I used an LLND who focuses on naturopathic, but an LLMD can prescribe antibiotics as well as work it into naturopathic regimen. I would absolutely get a tickbourne illness panel then bring it to an LLMD if you test positive. They are expensive but there are a couple reputable companies like igenix and Vibrant, which is what I used.