Treatment with the AIDS cocktail

Hi Jam, thank you for your answer and sympathy, happy to hear you guys have a slower version. He’s on riluzole, orencia, B12 and a handful of vitamins but nothing slowed his progression so far. We’ve recently tried a fecal microbiota transplant in Slovakia which honestly was the only thing we could almost immediately see improvements (his voice had a slight disturbance which is now gone, he had more energy and constipation is gone). We’re trying to get him tested for herv to see if the aids cocktail could be helpful, fingers crossed.
 
Can the FMT be obtained by those outside of Slovakia? In US or travel to Europe….??
 
Leticia,
Lmk if you are able to get him tested for the HiRV - we would like my husband to be tested as well. We meet (finally) with his clinic 10/16. The only contact we have had this far was the day we met the neuro & he gave us the news same visit. That was in 9/5 so we are very anxious to go to clinic!
 
From reading the post - i think “fecal microbiota transplant.” I am looking it up also- never heard of it…
 
Marine guy,
How are you doing? I hope well🙏.
 
Hi guys, yes FMT stands for fecal microbiota transplant, we live in France so yes it’s available for people outside of Slovakia, our doctor said it was fine to give it a go but no prescription was needed. There’s nothing proven when it comes to ALS and FMT but we’ve read a few promising studies and thought it would be worth a try. He’s been on his medications since May so his doctor thinks the improvement might mostly be from the drugs starting to work, but I just think its too much of a coincidence they finally started to work on the week we had the FMT. 😅 Our doctor didn’t answer yet about the herv but will keep you posted in case we manage to do it. :)
 
I hope he continues to improve. Like you, as a CALS, the helplessness is so hard. I think that’s why I search, read, everything I can- it makes me feel I am helping in some way. Whether I am or not - 🤷‍♀️, but I won’t stop trying. Keep me posted.
 
Fecal tranplant has potential in ALS. BUT I would be leery of going to do fecal transplant somewhere without doing a lot of homework.

Per the fecal transplant team at Duke, you will need to think about how to get eliminate 100% of your own bacteria. The clinic you are doing the transplant from will have to get you on large dose antibiotics and then monitor you, adjust dose and measure things until everything is gone. This can take a long time. You cannot transplant new things into your gut if the native microbiome still exist.

Then you have to figure out who's stool to transplant... is it from a normal person, a slow progressing als person, someone who experienced a reversal, is it treated with something like probiotics. Why did they choose this person stool to transplant, they have to be able to answer that.

Then The clinic doing the transplant will also have to have a way to Measure if the transplant is successful by testing your stool. Concurrently, they should be also monitoring your ALSFSR or some kind of scale to see if it is working.

The entire process should take about 6 month with multiple fecal transplant per week in order for it to be successful. There is no such thing as going somewhere, doing a fecal transplant once, and then be done with it. Clinics that offer fecal transplant just once without offering pre treatment or post treatment monitoring to see if the gut bacteria actually changed 3 month, 6 month, a year after transplant have the red flags of being a scam.

This is elaborated in depth in Dr. Bedlacks recent presentation to NEALS. If you are interested in fecal transplant, they are starting a trial next year using the protocol described above that I am paraphrasing.
 
Thank you Ahl for that thorough explanation. Honestly I hadn’t even heard about it. At this time I don’t think it is the best fit for us. Man I pray with all these various options/trials going on one of them is successful and can make a real difference.
 
You’re right about the complexity of the procedure, but that didn’t stop my fiancé from feeling benefits on its first week. We have a two month microbiota supply on our freezer atm to finish the first round of the treatment, first 5 sessions were done at the clinic then the following ones are done at home by our caretaker. We used the same donor as another patient with ALS on their clinic used and felt benefits. Like I said before, this is not a specific treatment for ALS nor it is approved for ALS, so it’s needless to say his monitoring wasn’t that detailed. We live in France so any trials in the US would be very difficult.
 
That sounds promising! Please keep me posted on how he is responding. I am keeping you both in my thoughts & prayers.
 
My wife suffers from bulbar ela and has a gastric tube, in which clinic did she have the transplant and how much did it cost approximately? If you can know, thank you
 
Thanks for asking. My PALS has bulbar- but it thankfully so far is just the tongue. Speech is affected. Been about two years since symptoms started. It thankfully has not progressed fast.
Keep looking for trials and research. Presently on the two FDA drugs- but not sure if they are helping. Looking at the Healy D drug…
Anyone have good results with Healy?
 
You say two drugs Is one nuedexta? Technically for pba but it helped bulbar in a small trial and there are multiple anecdotes too
 
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