Rituximab (Rituxan, Ritumax)
<p >B-lymphocyte Depletion Using Rituximab for CFS and Epstein Barr treatment
"EBV was eliminated from by the treatment of rituximab. This would be consistent with the B cells being infected by EBV being depleted." </p>
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OMI treatment center Silicon Valley
The last segment is about a lady who is doing much better about being treated with rituximab at the OMI in Silicon Valley. <a href="https://youtu.be/NY1UoCK8TU0">https://youtu.be/NY1UoCK8TU0</a></p>
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From phoenixrising users on 'Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?' <a href="http://forums.phoenixrising.me/index.php?threads/does-anyone-know-of-any-cases-in-the-us-where-rituximab-has-led-to-remission-of-cfs-me.53053/">http://forums.phoenixrising.me/index.php?threads/does-anyone-know-of-any-cases-in-the-us-where-rituximab-has-led-to-remission-of-cfs-me.53053/</a></p>
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"The drug apparently completely cures around ⅓ of ME/CFS patients according to the <a href="https://translate.google.com/translate?langpair=no%7Cen&u=http://kolibrimedical.no/" target="blank" class="externalLink" rel="nofollow" ><b>Kolibri</b></a> private hospital in Norway (see <a href="http://forums.phoenixrising.me/index.php?threads/rituximab-im-from-holland.47807/#post-784919" class="internalLink" ><b>this post</b></a>), and according to the <a href="http://www.openmedicineinstitute.org/" target="blank" class="externalLink" rel="nofollow" ><b>OMI</b></a> (see <a href="http://forums.phoenixrising.me/index.php?threads/why-do-the-fluge-mella-trials-seem-to-be-more-successful-than-off-trial-reports.49178/page-2#post-810850" class="internalLink" ><b>this post</b></a>), and according to Fluge and Mella's published 2015 <a href="https://www.ncbi.nlm.nih.gov/pubmed/26132314" target="_blank" class="externalLink" rel="nofollow" ><b>phase II study</b></a> (which found 11 out of the 29 patient treated were still in full remission 3 years later)."<br />
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"My doctor who was from OMI but now in his own private practice (OMF is actually the research piece vs. the institute) feels that the potential responders are the ones with autoantibodies who have had good responses to IVIG.<br />
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<div class="attribution type" >dreampop said: <a href="http://forums.phoenixrising.me/index.php?goto/post&id=879474#post-879474" class="AttributionLink" >↑</a></div>
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<div class="quote" >I also don't buy into someone with long term moderate or severe M.E. not coming onto one of the online forums to rave about it.</div>
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<p>I can tell you with 100% honesty that since posting my thread about Rituximab, I have been contacted by multiple people who did Rituximab either through OMI or Kolibri and several had good responses. I was also contacted by one OMI patient over a year ago who had a good response but she did not want to share it on the public board for personal reasons. Since I do not have permission to share any of their names or details, I have to honor that but this is several people and they really do exist.<br />
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<div class="attribution type" >dreampop said: <a href="http://forums.phoenixrising.me/index.php?goto/post&id=879474#post-879474" class="AttributionLink" >↑</a></div>
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<div class="quote" >1) Is it the same protocol - dosage/time/etc.. Only someone who has been on Ritux at OMF can answer this question.</div>
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<p>My protocol was the autoimmune protocol which is 375 mg Ritux/BSA (body surface area) which for me equals 600 mg per dose vs. in the Fluge and Mella study it is one gram per dose regardless of the BSA formula. My doctor feels that total B-cell depletion is the goal and such a high dose is not needed in many patients (which also decreases the risk of allergic reactions and other side effects).<br />
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<div class="attribution type" >silky said: <a href="http://forums.phoenixrising.me/index.php?goto/post&id=879422#post-879422" class="AttributionLink" >↑</a></div>
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<div class="quote" >And why would they keep giving their patients an expensive, potentially dangerous drug if there were no responses? I would be inclined to say marketing</div>
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<p>My doctor got it covered by my insurance so all I will have to pay is the co-pay. I have to be honest, I find it a little insulting to imply they are doing this for the marketing. Ritux was not even considered for me for over three years of being an OMI patient until I had a life-changing response to high dose IVIG first. No one pushed this decision on me and we discussed it for over a year of IVIG until we reached the decision that I had a good chance of being a responder. I did all possible safety tests (for Hepatitis, TB, JC Virus, etc) and coordinated the infusion with my MCAS doctor so it was done locally and as safely as possible. My MCAS doctor is actually the one prescribing it so I can do it at his infusion center without having to travel up to OMI. I am documenting the entire thing in another thread and even if it does not provide remission, or any benefits beyond IVIG, I have zero regrets that I tried it.<br />
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Once more patients get the opportunity to try it, there will be more public reports on boards like PR. I was contacted by an OMI patient on FB in my calcium auto-antibody group who believe it or not, had never even heard of PR or that it existed. So, not everyone uses the internet as much as we do especially if they are too ill to post."
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You also have Maria Gjerpe who started the crowdfunding MEandYou for the Fluge/Mella Phase 2 study (Not Phase 3 as you state, Phase 3 is not published until 2018). Maria was testing the procedures for the Phase2 study and went from being bedridden to working 80 % in just over half a year. (Sorry link only in Norwegian, use Google Translate <img src="/bf899d13-0dde-5b4c-a8b4-e0e1ad959168.png"/><br />
<a href="https://www.aftenposten.no/norge/For-jeg-fikk-behandling-brukte-jeg-en-hel-dag-pa-a-lage-middag-til-datteren-min-585333b.html" target="_blank" class="externalLink" rel="nofollow" >https://www.aftenposten.no/norge/Fo...a-a-lage-middag-til-datteren-min-585333b.html</a> )
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that the people who had a solid chance of being responders were those with proven B-cell driven auto-antibodies but he did not say that someone without auto-antibodies could not respond. I think there is a just a greater chance of being a responder if you know that you have actual auto-antibodies to knock out. <br />
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The Fluge & Mella paper (the one with the 12 authors) said that the responders had the beta-adrenergic and anti-muscarinic auto-antibodies, plus anti-thyroid antibodies, plus a positive ANA titer, and I have all of those things. But my assumption is that someone who did not have those things could still be a responder and that I could end up not being a responder. It's a crap-shoot but we felt that I had a decent chance at being a responder.</p>
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