posted
Bluntly said, those who have lyme symptoms and don't get to see a LLMD, very often end up with a ME/CFS diagnosis.
So the results of this study might be relevent to the lyme community as well.
They used the anti-CD20 antibody "rituximab" on three patients, and they improved like this (if the graph goes down, that means that the symtpoms "goes down"):
What makes me think that it's not a placebo effect that we're seeing, is that they all get better after 6 weeks...
The medicine can be hard to toleralte, but I can't say Lyme (or ME/CFS) is that toleratable either.
It's expencive (a little less than 5000$ to get a 1 gram dose. They in the study took 1 gram or less initially).
posted
The exciting thing is that they are now almost complete with another much bigger trial, and they will un-blind the trial soon . Some of the participants are on ME forums. The details are on clinicaltrials.gov .
what is essentially going on , is that the drug is affecting B cells, and the theory is that the B cells are where the xxmrv retrovirus is. Maybe.
The original patient where this was discovered, got well, she got normallly functioning on rituximab.
Posts: 366 | From Europe | Registered: Nov 2008
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
How very interesting. Sadly, I don't see much likelihood of this being widely available at that price, even if the bigger trial shows the same results.
Do you know if people sustained the improvement when they were off Rituximab?
quote:Originally posted by n.northernlights: The exciting thing is that they are now almost complete with another much bigger trial, and they will un-blind the trial soon . Some of the participants are on ME forums. The details are on clinicaltrials.gov .
what is essentially going on , is that the drug is affecting B cells, and the theory is that the B cells are where the xxmrv retrovirus is. Maybe.
The original patient where this was discovered, got well, she got normallly functioning on rituximab.
That's fantastic. Maybe there are two ways to go after lyme (IF lyme and XMRV most often together) - Treat lyme, and hope the immune system takes care of the XMRV - Treat XMRV, and hope the immune system takes vare of lyme.
I don't think any of those two strategies would make a chronically ill person 100% well again. But it might be that if both things are treated, a full recovery could be achievable.
IF XMRV (or another viral infection) comes together with lyme...
Posts: 275 | From Home | Registered: May 2007
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Very interesting...
AS you requested, I posted the new Columbia Study on XMRV /LYME/ and CFS...but it was moved to GENERAL by the moderators. You will have to check in general or activism where it was sent.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: Topic: Columbia Lyme Study connects lyme, XMRV, CFS in support of NJ research facility
I don't know why the link is in general or activism?
Seems like medical info to me...
----
PS - the study for rituximab was only 3 people... Is that really worth getting excited about?
I'm not saying it's bad - it's just that it's a really small study!
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Someone reported it and the moderators moved it...sorry. I hit a raw nerve. I was asked not to post it again. Sorry guys.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
I looked a little deeper into this, and I can see that Rituximab has had very positive effects for several diseases which I put in the category "lyme related", such as: - Rheumatoid Arthritis - Multiple Sclerosis - And now chronic fatigue syndrome as this pilot indicates.
Posts: 275 | From Home | Registered: May 2007
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posted
Thanks for this link Peter. This is great news and opens many more doors for understanding and treating xmrv, which I believe is a huge co-infection issue for many of us.
I think toxicity with this drug would be a problem for many of us with compromised detox systems....but the discovery certainly propels us in the right direction.
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