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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hey everyone just so you know I lied ... Wormwood was not the herb I hoped it would be. This is Artemisia Absinth NOT Annua. It did help but only at very high doses and at the high doses that did not require me to be on Valcyte, it caused alot of insomnia. There is really not much research on the herb out there. Thujone is the active ingredient in the plant which is also toxic but that is the same ingredient that some people think make the herb chemotherapeutical. In that sense I thought it did work but don't know how long I should be on it.
I am back to square one and just as clueless as everyone else again.
I just realise that Rituxan is a very very bad idea for pple with CFS. Avoid it at all costs if possible.
Rituxan is used in patients with Lymphoma. When it is used in such a case you would probably only be on it for one treatment. That treatment would wipe out all your B cells, both the good and bad and in about 9 months time your body then produces healthy B cells. The treatment is considered over and the patient is considered cured.
But in a case of someone with CFS where there is chronic B cell malfunction, you would have to be on the treatment all the time for it to work. Once you stop the treatment the symptoms come back because the problem is in the maturing of the B cell phase that causes abnormal B cells. That would mean you would have to be on Rituxan all the time, that would mean that for it to work you would have NO B cells at all all the time for symptoms to regress. Very Bad Idea ! It is a very very bad idea to have no B cells at all lifelong.
Having said that I know that MS patients have no other choice but to be on Rituxan continuously to stop the prgression of their disease and many of them say it was the best thing that they had ever done. It is still a very bad idea though.
Cud it be Kogelnik ? I think he wants to combo Valcyte and Rituxan.
Btw with all the new developments and what we as pple with CFS already know, does anybody now not think that it is some form of leukemia that is incurable ? Sure seems that way. And the reason why PWC need so much more supplements than the average person does is bcos we are trying to handle a cancerous growth ?