Welcome to Phoenix Rising!
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.
To become a member, simply click the Register button at the top right.
Rituxan does not deplete all of your b-cells, it only depletes the b-cells that express the CD20 marker. If you really had no b-cells, you would be dead within weeks.
Some patients in the Norwegian study stayed better for three years after getting a measly two doses of Rituxan and they still have not needed retreatment. But most patients needed retreatment.
Dr. Kogelnik is trying to combine antivirals with Rituxan in order to inhibit the active virus while depleting the reservoir of latent virus. He believes this results in a higher response rate than either treatment alone, and he is hoping that the combination will result in a more prolonged remission.
I did Methotrexate (MTX) for awhile, only a month so I don't know if it even worked or not. Honestly from my own experience and how I am recovering, all the symptoms of CFS is just a facet of a broken down detox engine. Get that up and working again and your body can heal itself. I am quite confident of saying this because I have had it all too: EBV, gut dysbiosis, depression, weak nervous system, weak immune system, weak or autoimmune attacked thyroid and mitochondrial damage. I have had one point or another gone through PEM and Orthostatic Intolerance.
CFS is not 'in the gut' as many people think it is or at least it is not an issue caused by the gut. It is toxins stuck in the gut when bile gets dumped there and cannot leave the body that causes the environment for gut problems and pathogens. Worse yet bile that just sits in the gut with toxins will just get reabsorbed again into the body just to be recirculated and redistributed. You have to get it out.
I waited awhile to check reactions to post this but I don't have CFS. This is a new developement that I am sure of. I have stopped Valcyte for 2-3 months now.
I do have another problem though a body that just cannot detox. I notice this awhile back when I feel worse in the winter. I think it is my liver. It just cannot detox and I have to keep activating it or coaxing it or it will stop and all my problems will come back.
I will start a new thread soon about what I have been doing but CFS is definitely a detox issue and I view more and more from that point of view now.
Congratulations! It's always good to hear of someone who has gotten past CFS.
How are you defining CFS in the sense of not having it anymore? Do you not have PEM? Do I understand correctly that you are still detoxing? How do you distinguish the toxicity from the CFS? I look forward to your thread on what you have been doing.
I don't have pervasive chronic symptoms of fatigue, that is what I don't have anymore and that I how I define it I guess. I am able to leave my home and go out everyday of the week for awhile even though I come home tired. Although over one weekend I played tennis for 2hrs each on both days back to back and felt ok after that. No prolonged PEM, was even able to function immediately after that.
I am still detoxing, I will always detox I guess. My whole diet is taken up with detox foods now as I arrange my work day around my main meals.
I distinguish this round of toxicity from CFS from the fact that even though I am weak and struggling through it. I am still able to struggle through it in the first place and go back again to work the next day.
I am closing this thread soon. I've changed my mind I think CFS can be cured, or a functionally daily cure from the foods we eat.
undcvr,
Could you give us a little info on your Detox protocol, please?
One of the cornerstones of my detox protocol is EGCG, the extract from Green tea. By some estimates I am taking anywhere betweem 60-100 cups worth of EGCG in green tea a day. Assuming 10-25mg of EGCG in a cup of green tea. I try to take 1000mg of EGCG a day. I am about 155 lb.
If you can somehow scale up to somewhere near that amount. It. Will. Change. Your. Life. No matter what kind of chronic disease you have. I think that everyone with ME/CFS should be on super high doses of EGCG or Curcumin. It is just that for cultural reasons ( I am Chinese ) and cost effectiveness, I prefer EGCG.
Be warned that moving up to that high amounts will have detox issues along the way. You body will be seduced by it to dump toxins, they will go into the bloodstream. If not detoxified fast enuf by the liver, and they nvr can, they will cause problems along the way. Start slow and take stuff to support liver detox processes too. There is a low-caffeine version of this EGCG out there.
Also women CANNOT become pregnant while on it. It is linked to other neonatal issues not just neural birth defect which is easily corrected by a folate supplement. I take an active folate supplement.