My Experience With Dr. Kaufman at the Open Medicine Institute

[msf]

Are you talking about Dr/Mr Kauffman, or Dr/Mr De Meirleir?

 

[msf]

I think this is the problem with Ritux at the moment - you have a one in three chance of wasting thousands of dollars.

 

[Kati]

It's

I think this is the problem with Ritux at the momento - you have a one in three chance of wasting thousands of dollars.

not a waste of money if you are willing to take the risk to start with.

 

[msf]

Obviously you could say the same or worse about any kind of treatment with any ME physician, but I think Ritux must be near the top of the price list, possibly along with antivirals (although some people´s insurance pays for this).

 

[msf]

I know what you mean, waste suggests that it was a bad idea to take the risk. Perhaps I should have said you may spend thousands of dollars with no reward.

 

[Kati]

Patient assistance elegibility from that particular drug company is very generous. Just saying.

 

[perrier]

Yes, I'am, and yes, i have it at OMI

Dear funky queen. I'm sure you know and understand how much many of us want to know more about your response to rituximab. Can you outline more please. Or please direct me to where you have done this. What about other patients you have met there. Please tell us about everything. I'm a heartbroken mother,who can't bear watching my daughter suffer so horribly with no relief.thank you.

 

[morse27]

I

Patient assistance elegibility from that particular drug company is very generous. Just saying.

its true Cathy and free.of course

 

[funkyqueen]

Dear funky queen. I'm sure you know and understand how much many of us want to know more about your response to rituximab. Can you outline more please. Or please direct me to where you have done this. What about other patients you have met there. Please tell us about everything. I'm a heartbroken mother,who can't bear watching my daughter suffer so horribly with no relief.thank you.

I'm so sad that is your daughter who have ME ... I'm really sorry for her ( and for you , of course)
I have great difficultys with the fact that 10% of PWMEers are childrens / teenagers ...
Here is the thread where I talk about my experience
http://forums.phoenixrising.me/index.php?threads/my-rituximab-experience-for-me.38239/
Thoughts

 

[funkyqueen]

Does your doctor think you have any issues that Ritux won´t fix?

No,on the contrary.
Even if she understood like me and with me that Rtx, (in my case) can not help with all ME issues, and not giving me my old health back totaly, she find like me how interesting is to learn about what kinds of symptoms a B cell depletion therapy can help in ME disease

 

[msf]

Sorry that was a problem with my English, not yours - I was asking whether she thought that you had other problems beside those that Ritux can help.

 

[funkyqueen]

Oh, ok. No, i absolutely do not have others auto-immunes issues except ME ( provided that ME is only a matter of autoimmunity, which I doubt). My tests for autoimmunes diseases were very completes, so it's something that I'm pretty sure about.

 

[perrier]

Oh, ok. No, i absolutely do not have others auto-immunes issues except ME ( provided that ME is only a matter of autoimmunity, which I doubt). My tests for autoimmunes diseases were very completes, so it's something that I'm pretty sure about.

Thank you for your responses. Merci. I just would like a clarification SVP: before you started the Rituximab, was there some test you had to take to determine your eligibility? In other words, is there some marker for autoimmune disease. Forgive my ignorance.

 

[morse27]

Thank you for your responses. Merci. I just would like a clarification SVP: before you started the Rituximab, was there some test you had to take to determine your eligibility? In other words, is there some marker for autoimmune disease. Forgive my ignorance.

yes of course , i was treated too in OMI with RITUXAN since december 2014 in same time, and there are some bio markers to be sure if you are ME ! SIBO test, NK cell panel .......health history

 

[perrier]

yes of course , i was treated too in OMI with RITUXAN since december 2014 in same time, and there are some bio markers to be sure if you are ME ! SIBO test, NK cell panel .......health history

Merci. And what is your improvement, if I may ask. What changes?
The test you indicate is regular. NK cells are low in my daughter. But I mean for autoimmune is there some test.Merci. Bonne chance!

 

[Gingergrrl]

There is currently no test that determines if someone who has ME/CFS is a good candidate for Rituxan or who will be a responder. This is not just at OMI, but anywhere. The science is not there yet.

 

[funkyqueen]

Thank you for your responses. Merci. I just would like a clarification SVP: before you started the Rituximab, was there some test you had to take to determine your eligibility? In other words, is there some marker for autoimmune disease. Forgive my ignorance.

@perrier : Are you French too ?

Yes, some tests are done prior to starting Rituximab, i made some blood, stools, and saliva tests (not sure if all these tests were for what you called " eligibility for Ritux", maybe some of them was for Research, i do not remember exactly)
The only important test i knowed before starting this kind of protocole, was that Doctors who used to give Rtx, make sure before that their patients do not have JC Virus - 'cause it increase a lot your probabilies to develop PML ( Progressive multifocal leukoencephalopathy ). I knowed that it was not my case, because my French Internist Doctor search it in my CSF, in case Frenchs Doctors were agree to give me Ritux in a Hospital's staff.

I'm not sure about the fact that OMI have only ME biormarkers , but maybe... And i really hope so ! They work so hard !..., for me, they really deserve to be the first who will discover specifics ME biomarkers, and then develop the ME diagnostic test
Dr Kaufman learned me that the low NK cells function is very common in PWMEers , but then,i learned that a low NK cell function is not only seen in ME

 

[funkyqueen]

There is currently no test that determines if someone who has ME/CFS is a good candidate for Rituxan or who will be a responder. This is not just at OMI, but anywhere. The science is not there yet.

@Gingergrrl I read a very recent study sayin' ( in essence) that some markers in Ritux's responders were differents, compared to these same markers before the treatment, but not in non -responders.
As I am very poorly organized, and that I put loose all the studies I read, I may have a hard time to find it you now, lol, but I know that you follow too ME research, so you probably seen it

 

[Gingergrrl]

@Gingergrrl I read a very recent study sayin' ( in essence) that some markers in Ritux's responders were differents, compared to these same markers before the treatment, but not in non -responders.
As I am very poorly organized, and that I put loose all the studies I read, I may have a hard time to find it you now, lol, but I know that you follow too ME research, so you probably seen it

@funkyqueen I have no idea if there are markers in those post-Rituxan that differ in responders vs. non-responders so I cannot fairly comment on this. What I do know for sure is that there are no markers pre-Rituxan that determine if someone is a good candidate. There may be things that rule someone out (such as testing for the JC virus like you said, or if someone is allergic to it, etc) but there is nothing definitive that determines who will be a responder or non responder.

 

[Immunity]

Hi everybody,
I'm going to visit dr. Kaufman next year. This is a long way for me, maybe Belgium is even nearer, but I somehow trust dr.K more. The only big question I have is whether he specializes in autoimmune issues. The inflammation I'm suffering from now is due to proinflammatory cytokines which cause autoimmune reactions. No AI diagnosis so far, but dr K confirmed my supposition about MCAS in correspondence. I want to be sure that he runs AI tests and prescribes steroids or other stuff if needed.
Please share your experience on AI problems treated at OMI.
Thank you!!