Sad news….

[bruschi11]

You’re welcome. What you’re saying makes sense, I know that the gut microbiome is very important but also very poorly understood by science and medicine. We evolved to have certain bacteria living with us in our intestines, and they are like an invisible organ that does certain functions. Certain antibiotics can wipe out helpful bacteria and cause problems.

Cipro is ultra-powerful, and also overused. I had been prescribed it a few times in my life and I’m lucky that I never got sick from it. I would only take it again as an absolute last resort, but hopefully that will never have to happen.

I’m hoping that you can get to a doctor and get formally screened for ALS. They can do an EMG, nerve conduction study, and an MRI. If you do have it, there are a few drugs that can slow down the decline in function, and alleviate the symptoms somewhat, and extend lifespan. I would go get tested just to make sure… Can you do that?

You have to approach a new doctor (neurologist only,) and do it in the right way. If you come in too logically, they can’t handle it, like if you talk about your gut microbiome, BMAA, etc, they’re going to think you’re crazy, because it wasn’t taught to them in medical school. Even though it’s in the scientific literature. I would go to a new doctor and tell him your symptoms, you could even tell him ALS runs in your family, and then tell him you’re very worried that it’s ALS and you want to be tested for it. Then the neurologist should do the tests, and you can have your answer 100%. If there’s even a 1 in 10,000 chance that this is something else, that you can recover from, you deserve to know that.

I’m not sure what all of your symptoms are, other than feeling terrible and having a crash, but I hope you’ll be able to get the tests soon. I’m rooting for you.

I mentioned the neuroquant above. Currently all
testing is on brain. I saw an ALS specialist a month back. I do not have any physical symptoms yet besides some muscle twitching and extreme weakness. I have admittedly very recently caught my speech slipping a little bit.

It’s all brain. Severe brain. Much different than any brain I’ve had in past. I think this is starting as more Parkinson’s. The disease is called ALS-PDC (Parkinson’s dementia complex) caused by BMAA. I guess for some the disease can start in brain and take years to move to the ALS we all know of where body freezes up.

ALS is a joke in diagnosis. They fucking take on average 18 months to diagnose someone. And when you’re like me and it’s purely neurological- I have no chance.

I have appointments set up and looking at a neurologist in San Antonio who does neuroquants and treats ALS.

But in meantime it’s just all about self experimentation. I think my next thing I try is gonna be loading leucine and ozone. At this point I’m better of dead than my current lifestyle so I feel there’s nothing to lose. Just give this a shot. If I need to take low dose Ativan while I try that’s what I need to do.

The best day of my pfs recovery in ‘17 was stopping mirtazapine. After 2.5 months of treatment for Lyme. That prior weekend I played 45 holes of golf over two days. Before my juice fast Id be so fatigued from just 2-3 holes. And struggle to finish 9. I realized something was happening so I stopped the mirtazapine. I was fine! Cried my eyes out. Maybe I can replicate that again here. But Ativan is a scary fucking drug to get hooked on. Wish there was something else .

[LetsGo]

I mentioned the neuroquant above. Currently all
testing is on brain. I saw an ALS specialist a month back. I do not have any physical symptoms yet besides some muscle twitching and extreme weakness. I have admittedly very recently caught my speech slipping a little bit.

It’s all brain. Severe brain. Much different than any brain I’ve had in past. I think this is starting as more Parkinson’s. The disease is called ALS-PDC (Parkinson’s dementia complex) caused by BMAA. I guess for some the disease can start in brain and take years to move to the ALS we all know of where body freezes up.

ALS is a joke in diagnosis. They fucking take on average 18 months to diagnose someone. And when you’re like me and it’s purely neurological- I have no chance.

I have appointments set up and looking at a neurologist in San Antonio who does neuroquants and treats ALS.

But in meantime it’s just all about self experimentation. I think my next thing I try is gonna be loading leucine and ozone. At this point I’m better of dead than my current lifestyle so I feel there’s nothing to lose. Just give this a shot. If I need to take low dose Ativan while I try that’s what I need to do.

The best day of my pfs recovery in ‘17 was stopping mirtazapine. After 2.5 months of treatment for Lyme. That prior weekend I played 45 holes of golf over two days. Before my juice fast Id be so fatigued from just 2-3 holes. And struggle to finish 9. I realized something was happening so I stopped the mirtazapine. I was fine! Cried my eyes out. Maybe I can replicate that again here. But Ativan is a scary fucking drug to get hooked on. Wish there was something else .

Yeah, I was going to say that about the Ativan. Benzos are scary, and it can be very difficult to get off of them once you’ve been on for awhile. Most people who take it for more than a few months, take it for life.

I hope that the neurologist’s tests are able to answer some questions when you see him.