I have stopped taking Valcyte completely, rite in the middle of the time of the year that is seasonally the worst time of the year for me. No relapse yet. This is crazy insane, I shud be bed ridden by now. Will add a little LDN to the mix.
13th week of Valcyte
- Thread starter undcvr
- Start date
Ah how embarassing my bad
But apparently what I have been taking all along is not Sweet Wormwood but instead just Wormwood (Artemisia Absinth ). It was a simple mistake of having read the name on the tincture bottle wrong. The Wormwood I have been taking is from Eclectic Institute and I have been taking 3-4 times the dosage on the bottle daily. But wow did I stumble onto the right mistake ! I have gone off all my AVs and am feeling totally normal as the winter solstice begins.
Wormwood is related to Sweet Wormwood but they are not quite alike. Wormwood is more toxic. They have both been used extensively in the past to kill parasites. Could this be why Wormwood works so well ? Because it is killing cells in me that have gone crazy. If that is the case then how different is this from both Methotrexate (chemotherapy) and Valcyte which kills fast growing cells too.
So it isn't Artemisinin that is having the effect on me after all. It is actually the ingredients in Absinthe.
Not too sure what I am going to do now but I did just order afew more bottles of Wormwood itself.
*Also just read that wormwood is said to have chemotherapeutic activity*
But apparently what I have been taking all along is not Sweet Wormwood but instead just Wormwood (Artemisia Absinth ). It was a simple mistake of having read the name on the tincture bottle wrong. The Wormwood I have been taking is from Eclectic Institute and I have been taking 3-4 times the dosage on the bottle daily. But wow did I stumble onto the right mistake ! I have gone off all my AVs and am feeling totally normal as the winter solstice begins.
Wormwood is related to Sweet Wormwood but they are not quite alike. Wormwood is more toxic. They have both been used extensively in the past to kill parasites. Could this be why Wormwood works so well ? Because it is killing cells in me that have gone crazy. If that is the case then how different is this from both Methotrexate (chemotherapy) and Valcyte which kills fast growing cells too.
So it isn't Artemisinin that is having the effect on me after all. It is actually the ingredients in Absinthe.
Not too sure what I am going to do now but I did just order afew more bottles of Wormwood itself.
*Also just read that wormwood is said to have chemotherapeutic activity*
So about 2 weeks without any AVs so far. So far its been ok, just bearable. I notice that the amount of supplements that I have to take on a daily basis has gone up quite a bit but I am going to see if I can try it without the AVs through this winter.
und...hello
i have not been following your thread (or any thread really..bad brain fog)....but i am surprosed to see you stopping AV's. the last time we spoke, you said your CFS symptoms had almost completely vanished on the drugs! you were on high doses too, if i recall....
xoxox
sue
i have not been following your thread (or any thread really..bad brain fog)....but i am surprosed to see you stopping AV's. the last time we spoke, you said your CFS symptoms had almost completely vanished on the drugs! you were on high doses too, if i recall....xoxox
sue
Yea my CFS symptoms did completely vanish on Valcyte but only at the very high dose, also it was only the Chronic Fatigue that stopped, I still had other immune issues to take care of and the Valcyte did not address those. It only took care of the EBV it seemed.
I am not on just mega high doses of natural supplements most of them that can modulate auto immune conditions. So far my EBV has not come back yet. I test about 2-4 weeks apart.
I am not on just mega high doses of natural supplements most of them that can modulate auto immune conditions. So far my EBV has not come back yet. I test about 2-4 weeks apart.
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 am back to square one and just as clueless as everyone else again.
Join the club if your clueless like everyone else, lol.
Have you done much in the way of hormones? I ask this as i just read an article a few days ago how people with lupus using high doses of dhea 200mg a day helped them and they could lower their autoimmune drug dosages, thought of you when reading this. Didnt save the article but if i find it again will post a link.
cheers!!!
Have you done much in the way of hormones? I ask this as i just read an article a few days ago how people with lupus using high doses of dhea 200mg a day helped them and they could lower their autoimmune drug dosages, thought of you when reading this. Didnt save the article but if i find it again will post a link.
cheers!!!
Isn't Rituxan the same as Ritiximab? If so this is the drug that is being tested in the netherlands for CFS sufferes. I was speaking to my Immunologist about this the other week and he said it has already been through double blind placebo trials and is looking very promising as a potential cure.
I am interested in why you say it should be avoided?
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 all life long.
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.
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 all life long.
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.
If our b-cells arent working, whats the point of having them?? Theres also the theory of b-cells containing ebv etc so this could be an avenue to wipe out these infections not just supress with antivirals??? There is a doc in the US(cant recall his name) i heard who was looking into ritux treatment with antivirals, so i think he is working on the theory that the b-cells are causing problems by harbouring herpes viruses. Time will tell i guess, lets hope they sort it out quick.
cheers!!!
cheers!!!
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 figured out that it is some form of leukemia that is incurable ? Seems kind of obvious now. 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 ?
Btw with all the new developments and what we as pple with CFS already know, does anybody now not figured out that it is some form of leukemia that is incurable ? Seems kind of obvious now. 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 ?
Thats the guy dr kogelnik. I think with cancers etc its the horse or the cart thing, which is first? ebv and other herpes infections are well know to be involved in alot of cancers, but are these infections coming out because of maybe some type of cancer is suppressing the immune system?? We have too many questions and not many answers. Theres definately something going on with our white blood cells and lymphocytes so maybe related to leukemia.
Natural killer cells are know for their effect on viruses and cancers?? they seem to be finding abnormalities in b-cells, nk cells and cd8 cells, whats this mean? we are more prone to infections and cancers. Im not really sure which way to go, i just keep trying to treat things as i go, putting band aids everywhere i guess.
cheers!!!
Natural killer cells are know for their effect on viruses and cancers?? they seem to be finding abnormalities in b-cells, nk cells and cd8 cells, whats this mean? we are more prone to infections and cancers. Im not really sure which way to go, i just keep trying to treat things as i go, putting band aids everywhere i guess.
cheers!!!
Haven't posted in awhile. Been busy working and traveling. I have stopped all my antivirals and anticancer drugs. I am fine over the weekend I went for a hike, it was a really pretty spring day.
I have stopped taking any and all medication for my CFS for awhile now. I feel fine and for the most part feel strong. Nowadays all I do is make sure I keep my detox engine running and 'lubricated' I long as I make sure that as long as I maintain that, I have no CFS symptoms and I can function just fine. It's a theory of CFS that I have developed myself over the years and a treatment regimen that I go on. It's not flashy but it works.
Now hopefully if I stay on it long term, a few months, it will eventually pull all toxins out as I am going to make such the detox engine is functioning well. Gut dysbiosis, Candida, diarrhea, EBV, its all part of it I realise, in one form or another.
I have stopped taking any and all medication for my CFS for awhile now. I feel fine and for the most part feel strong. Nowadays all I do is make sure I keep my detox engine running and 'lubricated'
I long as I make sure that as long as I maintain that, I have no CFS symptoms and I can function just fine. It's a theory of CFS that I have developed myself over the years and a treatment regimen that I go on. It's not flashy but it works. Now hopefully if I stay on it long term, a few months, it will eventually pull all toxins out as I am going to make such the detox engine is functioning well. Gut dysbiosis, Candida, diarrhea, EBV, its all part of it I realise, in one form or another.
good to hear from you, glad your doing well.
cheers!!!
cheers!!!
- Messages
- 113
- Likes
- 131
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.
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.