.

[Jesse2233]

I've deleted this post so that the person can tell their story in full at a later date

 

[Cheesus]

Google informs me that this is around 5 miles! That sounds absolutely epic.

Obviously full recovery is the dream, but I can't even take a single step right now, so if I could get to walking 5 miles per day I would be elated.

 

[Murph]

Here's a link to an unconfirmed report of someone claiming they've been on rituximab 4 years, and says they started feeling better after around three years.

https://twitter.com/i/web/status/904324815036850176

If I'm translating right they say they can now read and write, chew and move in bed. They say it takes longer in people with severe me/cfs.

(Of course, correlation is not causation. some severe patients improve a little without rituximab.)

 

[Jesse2233]

@Murph

Wait so they were on RTX infusions for 3 straight before seeing improvement? I'm surprised their doctor kept administering it

 

[Jesse2233]

Google informs me that this is around 5 miles! That sounds absolutely epic.

Obviously full recovery is the dream, but I can't even take a single step right now, so if I could get to walking 5 miles per day I would be elated.

You had improvement from LDN and ART right? That's a good sign you can improve further

 

[Cheesus]

You had improvement from LDN and ART right? That's a good sign you can improve further

LDN works well for me. Aggressive rest therapy worked once upon a time, but ever since I had my EPIC crash something about my condition fundamentally changed. Now aggressive rest just makes me more tired.

Given my success with the LDN, I am starting a new therapy for immunomodulation this very day (helminthic therapy). I will keep you all informed.

 

[Murph]

@Murph

Wait so they were on RTX infusions for 3 straight before seeing improvement? I'm surprised their doctor kept administering it

amazing if true, huh?

I hope the doc generates a case report. If 3 years of ritux is effective for the severe cases then it might be doing something different than just removing antibodies.

EDIT: They do seem to provide some confusing messages about the timeline, saying they improved after one year at one point and a week ago at another point. My spanish is not that great tho.

 

[Jesse2233]

amazing if true, huh?

I hope the doc generates a case report. If 3 years of ritux is effective for the severe cases then it might be doing something different than just removing antibodies.

EDIT: They do seem to provide some confusing messages about the timeline, saying they improved after one year at one point and a week ago at another point. My spanish is not that great tho.

Interesting. If it was a year or several, the only thing I can think of is...

a) partial spontaneous remission of symptoms or b) no autoantibodies long term allowed for slow CNS repair

 

[Forbin]

Interesting. If it was a year or several, the only thing I can think of is...

a) partial spontaneous remission of symptoms or b) no autoantibodies long term allowed for slow CNS repair

c) restoration of gut barrier... ?

 

[Jesse2233]

c) restoration of gut barrier... ?

Would it take that long?

 

[Murph]

There is one patient in the Fluge Mella trials who didn't respond til week 94.

the same questions of cause and effect can be asked there, of course.

 

[Forbin]

Would it take that long?

I don't know what starting point one would use to define "long." If the response has something to do with interrupting a vicious cycle long enough for healing of some kind to occur, maybe they were just not able to sustain that interruption long enough in the first three years. Perhaps they modified their infusion schedule in light of newer findings, and, so, healing (if there was healing) only began in the fourth year. There's just way too little info to do anything but make dubious speculations... like mine.

 

[Gingergrrl]

I'm in contact with a US patient who has been on Rituximab since May. After being ill with ME and POTS for close to a decade, they have gone from a few hundred steps / day to over 10,000 steps / day with improved cognitive function.

I actually know the person you are referring to b/c it is someone I have communicated with via e-mail off & on for the past three years and their story is true. Obviously I cannot say more either without the person's permission but what you have written is correct.

 

[Benji]

Wow! Thanks for letting us know.

 

[Jesse2233]

I actually know the person you are referring to b/c it is someone I have communicated with via e-mail off & on for the past three years and their story is true. Obviously I cannot say more either without the person's permission but what you have written is correct.

Oh man now I feel silly for emailing you about this. Glad to see you confirming their story though!

 

[Gingergrrl]

Oh man now I feel silly for emailing you about this. Glad to see you confirming their story though!

Please do not feel silly at all and no way that you could know that I was in contact with this particular person! Apologies that I am slow to reply to e-mails right now (to you and others) but definitely plan to soon.

 

[Judee]

@Gingergrrl, @Jesse2233, are you both talking about the same lady as @Murph? If not, how long was the rituximab treatment for the lady you were talking about @Jesse2233?

Thank you.

 

[Gingergrrl]

@Gingergrrl, @Jesse2233, are you both talking about the same lady as @Murph? If not, how long was the rituximab treatment for the lady you were talking about @Jesse2233? Thank you.

Hi Judee, I just saw your tag and re-read this thread to try to make sense of it from 5-years ago! The original post in this thread (from Jesse) was deleted so I'm not sure what it said or who he was talking about. But I am almost certain that it is NOT the same person who Murph was talking about.

I clicked on the link from Murph and it was in Spanish and it is not referring to anyone that I'd been in touch with back in 2017. I was in touch with Jesse for many years but we also ultimately lost touch. I was also trying to figure out who I was referring to re: Rituximab. I can narrow it down to two women that I knew back in 2017 who had significant improvements but not 100% sure which person I was referring to in this thread without seeing the first post in this thread which was deleted!

I'm sorry that I can't be of more help!

 

[Judee]

who had significant improvements

Were the ladies you're thinking of who had significant improvements on the medication for a while because it seems like what Jesse2233 was saying would make sense that long term treatment gave the CNS time to heal, wouldn't you think?

 

[Gingergrrl]

Hi Judee, I'm so sorry but I don't know the answer! Prior to starting Ritux myself in August 2017, I actually spoke to about 100 people in my information gathering process (from PR, other internet groups, Facebook, and in real life).

If I could see the first post in this thread (which Jesse deleted), I might be able to figure out who we were referring to (b/c Jesse and I were in contact with a lot of the same people in our information gathering process at that time).

I think I have narrowed it down to two people (based on my PM's and e-mails from that time). If I am correct in who I think this thread was referring to back in 2017, I suspect that both of them had a positive response to Ritux due to autoimmunity. Both of the women had multiple autoimmune diagnoses (including lupus) in addition to their ME/CFS diagnoses.

I don't know anything about Rituximab in relation to CNS healing and my experience is all with B-cell driven autoimmunity (and in addition, Rituximab is of course used to treat cancer). I wish I could be more helpful!