@Jonathan Edwards I had neurological symptoms in the early stage, is my bone marrow was burning, and I could'nt see on my left eye. So when I was cleared out out MS. Why did I not get Rituximab? If rtx is the only medicine to be used to treat the condition to stop irreversiable brain damage? My vision came back after 3 months. I got back to work. Than after 2 years, feeling like I was standing outside myself... it chrashed and it rapidily got worse. I travelled to Germany. I felt alot better. But then it startet to burn like hell in the skin... and I got stiffer. What is the cause off all of this?
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Rituximab for severe ME. Should i try?
- Thread starter NL93
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morse27
Senior Member
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- NORTH of FRANCE
MS but not ME/CFS
@Jonathan Edwards But after a neuropshycological test, before I startet rtx. I scored bad on memory. But I was 5 times smarter than baseline (normal people) in a test with many cards.. with differdend colours. The system changed all the time. I solved it 5 times faster han normal people. The score did not get higher. Strange... Did I get smart after being sick?
I was tested for MS with fluid from my spleen.
You are a professor?
morse27
Senior Member
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it is not common in ME to be smarter than average,
all ME patients are slower in speed thinking,
recent memory loss
, and have a lower IQ than before the illness.
for me I was 152 IQ and now 90 !!.
its interesting your previous comment about your mishap with the facebook group!
all ME patients are slower in speed thinking,
recent memory loss
, and have a lower IQ than before the illness.
for me I was 152 IQ and now 90 !!.
its interesting your previous comment about your mishap with the facebook group!
My doctor at the Kolibri said I would be well again, the same said my other doctor. And it feels like too, atfter only two months on RTX.
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You think I did not have brainfog? ...and still have when I get tired. I barely got blood to my brain. My muscles was hard as rock! You can have alot of neurological symptoms without having MS. In a matter of fact one type of MS is now cured by the same medicine only 100% from human. The effect is the same. But that you didn't now maybe?
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morse27
Senior Member
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- NORTH of FRANCE
@Robin123
i was a patient of OMI in california
under rituxan protocole since december 2014
i know many secret information about result of clinical trial with RTX on ME
I can just say that it is a disaster !!
this treatment on all patients with ME illness: less than 10% experiencing a sustained remission and many others are experiencing the adverse side effects,
I blame the OMI,
its to "have seen from the beginning that I was not ME but have the gulf war syndrom induced by squalene adjuvant,
this did not prevent me to pay the sum of EUR 25 000 for nothing,
and have increasingly aggravate my condition for ever
i was a patient of OMI in california
under rituxan protocole since december 2014
i know many secret information about result of clinical trial with RTX on ME
I can just say that it is a disaster !!
this treatment on all patients with ME illness: less than 10% experiencing a sustained remission and many others are experiencing the adverse side effects,
I blame the OMI,
its to "have seen from the beginning that I was not ME but have the gulf war syndrom induced by squalene adjuvant,
this did not prevent me to pay the sum of EUR 25 000 for nothing,
and have increasingly aggravate my condition for ever
morse27
Senior Member
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- 123
- Location
- NORTH of FRANCE
good luck !!
Then you think the fluid testing was wrong? Have you heard about GB-syndrome? Many with Zika-infections get it! It is a virus! Have you also heard a cancer medicine can be a solution for those getting ill from Zika? Please do not answer me. I do not want answer from you. You are not a doctor nor a professor.
Sushi
Moderation Resource Albuquerque
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The opening poster, @NL93, started this thread seeking help with understanding the pros and cons of taking rituximab. A number of off-topic, personally confrontational messages were posted and have been removed. Any further off-topic and deliberately discourteous comments directed at other members will also be removed from this thread. Please stick to the topic.
After the first rtx-injection it felt like my spleen got longer. A fucking pain in the back. The next day it was gone. It was the same feeling like the first really heavy symptoms in my back. Like an axe in my back after the spleen was set on fire.
tinacarroll27
Senior Member
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- UK
For me I think the research is still in it's infancy with ME/CFS. They know Ritux helps some people with this illness but for me to use it I would need to see better evidence that they understand this illness better. There may be sub groups of patients who will not benefit from it and those who will. It's such a heterogeneous illness, they need to understand who will benefit and who will not. I don't know much about the drug but I think caution is wise, even though I know how desperate we all are to get better. It is so easy to make your self worse. If you decide to go ahead with it be cautious like others have said and go to someone who really knows what they are doing with this drug such as an immunologist. If you have severe POTs perhaps you could get some treatment for that and that would help you a lot. I have POTs and it was making me feel awful. There are things that can be done for it. Do you have gut problems with your ME? If you do I would suggest getting that sorted because I had gut problems and when I treated that the POTs got a lot better.
Something happens with the whole body. At least for me. My stomach gets better too. I can sleep. I don't wake up easily. Now I can sleep 24 hours in one course. Rituximab is not dangerous. Ibux is more dangerous. At least it will not hurt you if it doesn't work. In the start it was alot of pain. Pain like hell! It is now too, but it is only two months since I started. I have alot more energy. It last longer for each week. In the start something happened with my stomach... but now, my stomach is like before I got sick! If you have the money, try! It is not dangerous at all! You can also get enzymes to treat cøliaki. But maybe Rituximab fix that too...
tinacarroll27
Senior Member
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- UK
I am so pleased it is working out for you. Interesting it has helped your stomach as well. I am taking anti viral Valtrex at the moment for EBV but if that doesn't work for me I may consider trying Ritux in the future. I am struggling with the Valtrex as it has made me feel awful and my creatine levels were high, and I have had to reduce my dose after talking to my doctor. May have to come off it, so I need to consider my next move. Thank you for you update and hope you continue to improve. Sounds promising!!
Gingergrrl
Senior Member
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- 16,171
@Robin123 are you doing the autoimmune dosing schedule (two doses total that are one week apart) or something different? Was also curious what (if any) pre-meds you took and if any allergic reactions to RTX? Am glad you have benefited from it.
I'm very interested in what you say. What is the secret info?
I have followed a little Whitney Dafoe's story, his dad the famous geneticist. And somewhere I read that Whitney became worse on RTX
I also follow Dr Edwards' posts.
It's very hard to know what to do.
My daughter is very severely ill, and we have gone around the world trying to get help, none forthcoming,
I don't want her to end her life, and need to take her somewhere for help.
Marky90
Science breeds knowledge, opinion breeds ignorance
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You`re in a difficult situation.
My personal opinion is that you take what you just quoted with a big grain of salt.
There`s no "secret info", OMI has not done any clinical trial on rtx for ME. They have been treating a lot of patients, and if we are to believe them, they are seeing the same response rates as have been seen in Norway.
Fluge & Mella have indicated that the severely ill might have less chances of major responses, but there is potential hope in the trial they are undertaking on the chemo cyclophosphamide. Immunoglobulins might also be something to try. I have seen several severly ill patients return to a state with decent quality of life after interventions, and a famous former severely ill me-patient in Norway, even got completely healthy by rtx.
However, personally.. I think I would wait a bit if possible, if I were severely ill. Even though lasting relapses due to rtx seem to be very rare, I think i would have gone for cyclo or a future combination of rtx and cyclo.
With regards to Whitney, we just don`t know. Maybe rtx made him worse directly, indirectly, or because of something else completely. It`s not right to speculate on his behalf.
Wish you the best in your decisions
Kati
Patient in training
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I am a patient at OMI and can say they are the best. Each patient make a decision for themselves as of whether they want one treatment or not and whether the risk is acceptable to them. Each patient signs an informed consent. The consent mentions various risks of the drug.
i have no regret to have tried, and I would do it (Rituxan) again tomorrow (or yesterday even). I cannot wait until Cyclo is being offered because I would be one of the first to have it injected. i am a chemo nurse, I know the risks and to me it is worth trying because this illness is becoming increasingly unbearable.
i have no regret to have tried, and I would do it (Rituxan) again tomorrow (or yesterday even). I cannot wait until Cyclo is being offered because I would be one of the first to have it injected. i am a chemo nurse, I know the risks and to me it is worth trying because this illness is becoming increasingly unbearable.
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