AI trials

nmderek

New member
Joined
Sep 26, 2024
Messages
3
Reason
PALS
Diagnosis
09/2024
Country
US
State
NM
City
Santa Fe
Is anyone on the AI trials in Australia or Peking? that seems like a good hope.
I'm taking some of Dr Goodenow's supplements But his $75,000 clinic for three months is a bit much of an ask, I wonder if anybody here's been through that protocol.
and then there's that doctor in Saskatchewan, It hasn't started testing but he thinks the protein in the nucleus isn't staying in the nucleus But he's two years away from testing on mice.
I was diagnosed with ALS by the Mayo Clinic in Rochester MN in September, it started with my right hand going dead and my left hand arm is almost dead now I started my first round of Raticava and have been on Rylazole for two months with no side effects. I have rt shoulder pain That is making it hard to position myself for sleep.
It seemed like common supplements For people that have improved are l-serine, Luteolin And thc/cbd.
Has anyone tried micro dosing mushrooms?
Stem cells seem like most people haven't much success.
I may try the ewot With an oxygen concentrator.
 
Please don’t even consider Dr Goodenow. If his method worked it would be shouted from the rooftops

The idea of issues with the nuclear pore membrane is not new. It has been known for some time. So far efforts to treat ALS by addressing it have not worked

I agree that stem cells outside of a formal trial are not an avenue to pursue. I do not think ewot is advisable either. I know of no evidence for it and unsupervised exercise can definitely be harmfulontinue to chime in

Be cautious in reading about any reversals. Dr Bedlack studies them and it has recently been found the reversals share a genetic mutation which may well account for their improvement

Lserine is not a bad choice though. I would look at high dose methylcobalamin which has shown benefit in trial. I would also see ifthere is a clinical trial you might qualify for

Sorry you have to be here. Please continue to chime in
 
There is no literature or mechanism to support EWOT in MND. Supplementing oxygen creates more CO2 to exhale (that is the only way to get rid of it) and one of the main problems in MND is that exhaling gets progressively harder so the levels of CO2 build up and ultimately that is how most PALS die,.

In addition, exercise in MND should be metered so it does not cause more harm than good.

As Nikki noted, the Goodenowe protocol is complete quackery. His whole approach is using lab values seen in PALS to claim that if you lower the lab values you cure the disease. That is like saying, if you bake a corpse, it will come back to life.

Please spend your time, energy, money, and health on better bets that enrich you, not other people.
 
Thanks for your input I thought one of those 61 reversal videos the guy got back to golfing doing EWOT. I have been taking 50 milligrams per week as recommended by the doctor at Duke but no real change in fatigue. I've been heat sensitive when it was 80 degrees this summer wiping me out and the fatigue is the most challenging thing because I can barely have enough energy to do certain tasks. food also wipes me out a lot when they eat but I have to take 1/2 an hour nap .
 
Ibudilast just got a pretty good interm update. You can buy it from Japan or on everyone.org. it will be way cheaper than 75,000 I promise you that.
 
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