Seeking Rituximab treatment

[Vansails]

I'm new here as a member, severely disabled young adult with ME. Thanks to cort and the team for such a dedicated and BS free experience.
I have taken part in one clinical trial that Dr. David Patrick ran. I live in canada and there isn't treatment for me here, and I was told Dr. Patrick is trying to get another clinical trial done with rituximab, from what @Cort said on a forum page somewhere in here it might not happen until 2018. That would be really nice.

I was wondering if anyone else had any info on Dr. Patrick and this trial that is supposed to happen- I don't know if I could even contact him if I tried and if that would help. @Cort Why did you suggest that it might be 2018 when the trial starts up?


Another question is, if I were to seek Rituximab from OMI, do they let you know before you fly in and spend all that money if they will consider you as a candidate for this treatment or not? The risk is just so high for us severely ill and travelling to get worse, so it needs to be justifiable.

I wonder if seeking Rituximab in the states will screw up my chances to work with the team in my city who are trying to bring treatment here in canada.

I also wonder if Ampligen would be better for me. I'm positive for some infections like EBV and mycopalsma pneumonia. I've read some stuff suggesting Rituximab was linked to eliminating the EBV from the B cells but I can't tell fact from fiction.

Thanks

 

[Folk]

You can e-mail OMI tell your storie briefly and I think they can let you know if you are a candidate.
Also, I think that if you walk in and say you want to try Rituximab, they'll do it (of course you'd probably sign some papers and they would be taking in consideration that you're ill etc.)

I don't know about Dr. David Patrick and Ritux, but if you have his contact I think it worth a shot. He'll probably answer. It's common for ME/CFS specialists to know their patients situations and answer them.

Let us know how it turns out!

 

[AquaFit]

Vansails, while you're waiting;

I tried a Vitamin D therapy which fixes the T and B cells and doesn't actually kill the muscarinic acetylcholine receptors.

I took 10,000 IU Vitamin D (AOR brand, liquid) with 200 micrograms Vitamin K (you may need less as you're young), and 4-7 pills 100mg magnesium glycinate (Douglas Laboratories brand) according to the fatigue and pain I was feeling. After 2 months my doctor wrote a requisition for a lab to check my vitamin D and calcium levels. Everything was fine so I continued for a total of about 3 or 4 months. I felt much, much better. I'm not 100%, but not in bed most of the time anymore.

You may want to ask your doctor about the risks vs benefits of Rituxamab. Dr. Nancy Klimas says 30% are helped by it. For those other 70%, some can much worse off from the side effects. I think that there should be tracking of those who don't respond to enable a better qualification of who may respond and who may be worse off.

Love and prayers!

 

[Vansails]

I have e-mailed the OMI questions, but not a story - I will give that a go. I also need to phone them and I hope I can get some statistics on how many people in the clinic are responding to it.

@AquaFit I have heard the vit. D being distorted with autoimmune problems, but I haven't read enough to understsand it. I'm glad you are doing better!

Does Klima's clinic use RItuximab? I just watched the video where she said 30% - but I know Dr. Patrick is looking for a biomarker to point towards responders and non responders. That's why one reason I might try and contact him.

thanks both for the response.

 

[AquaFit]

I'm not in touch with Dr. Klimas. Does anyone else know?

Fyi, here's a 2013 study on Vitamin D: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3738984/ It's long, there's a conclusion at the bottom that sums it all up.

This 2014 Medscape article, at the bottom of the first page, says that recent studies confirm that Vitamin D on "B-cell homeostasis" which means it's promising as a treatment for autoimmune disorders. (Last paragraph on first page) http://www.medscape.com/viewarticle/758650_4

Some people are sensitive to Vitamin D, but I'm sure you'll check with a doctor before taking any treatments. All the best!