• 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.

Chemo drugs + Anti retrovirals: a treatement for cfs

undcvr

Senior Member
Messages
822
Location
NYC
Just saw my doctor today, he is a virologist that specialises in HIV. We were talking about the hiv positive guy who also had leukemia and had a bone marrow transplant. After which he was hiv neg. The talk in the medical circles is that even if the donor wasnt hiv resistant, if the man had survived the operation, he would still be hiv neg. Becos the doses of the drug they used to kill off his entire immune system is twice that of the dose that they used in the US. Basically they killed off all of his T cells, all of them. They basically starved the HIV virus to death. No more cells to feed on, the virus dies.
A less dangerous operation would be to use chemo drugs to kill off the cells while taking ARVs at the same time. This will achieve the same purpose. Unlike cfs, they already know exactly where the hiv virus hides.

Ironically they are trying the chemo and ARV approach first with cfs patients and the drug Rituximab.
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
That is truly amazing - if they can get rid of hiv entirely with a bone marrow transplant. I'm surprised we haven't heard any other hiv+ people trying it. I've always thought that a bone marrow transplant promised hope for CFS (obvious risks and expense aside).

Would chemo drugs kill off everything just like a transplant??
 

undcvr

Senior Member
Messages
822
Location
NYC
Yes, well at least this drug might anyway. Rituximab is a b-cell depletion drug so it kills off all the b cells in your body. That is actually quite a dangerous state to be in. For the bone marrow transplant, there is a 30% chance of death, very high, by modern operation standards. And again it is because you are left with NO IMMUNE SYSTEM.

The article about using Rituximab is here on PR somewhere. We were discussing it for a long time. Of course Rituximab could also make all your hair fall off, turn your nails black and fall off and kill you outright too. There is a 1 in 4000 chance of that, so well dont hold your breath on the drug anytime soon either.
 

Overstressed

Senior Member
Messages
406
Location
Belgium
That is truly amazing - if they can get rid of hiv entirely with a bone marrow transplant. I'm surprised we haven't heard any other hiv+ people trying it.

Because it's a very dangerous procedure. My father had cancer, got his complete immune system wiped away, got stem cell transplant, in order to have a new immune system, but it failed. After a short wile, my father's immune system failed to create neutrophils(he had only 100 left) and blood platelets, and he died due to a bacterial infection, that is harmless to us.

I wouldn't undergo such a procedure...

OS.
 

Ian

Senior Member
Messages
283
It sounds like a great plan to murder people. A better solution might be to support the immune system so it can do its job. The latter requires no expensive drugs. I guess that is why it will never be popular.

Chemo drugs cause massive damage to the body, and the brain, in fact mild retardation is so common from chemo theres even a name for it, Chemo brain.
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
thanks ukxmrv, i had read some of the rituximab thread but i didn't realize that there was already a study going on, i'm glad to see it. I agree these drugs and treatments are very dangerous, and unfortunately this might be a time when some of us decide it is worth the risk, in the future we will know how to treat this DD in a much more civilized way.

{{{{Overstressed}}}} I'm so sorry about your father, that must have been an horrific experience.
 

undcvr

Senior Member
Messages
822
Location
NYC
Because it's a very dangerous procedure. My father had cancer, got his complete immune system wiped away, got stem cell transplant, in order to have a new immune system, but it failed. After a short wile, my father's immune system failed to create neutrophils(he had only 100 left) and blood platelets, and he died due to a bacterial infection, that is harmless to us.

I wouldn't undergo such a procedure...

OS.

Overstressed I am really sorry to here that. I am surprised that they did not do the procedure with a bone marrow donor instead of using stem cells. May I ask why they decided on stem cells ? Of course it could just be that they could not find a donor in time.
 

undcvr

Senior Member
Messages
822
Location
NYC
It sounds like a great plan to murder people. A better solution might be to support the immune system so it can do its job. The latter requires no expensive drugs. I guess that is why it will never be popular.

Chemo drugs cause massive damage to the body, and the brain, in fact mild retardation is so common from chemo theres even a name for it, Chemo brain.

Ian as yet they have not found a way to do a safer procedure when it is the immune cells themselves are the ones infected, ie causing the infection. If even one single cell survives, the virus is able to reproduce again. They need to kill off every single kind of the cell that the virus uses as a host. At least for HIV they know where the virus is hiding in, in T cells. In CFS they keep guessing. (If your CFS is HHV6, EBV,CMV based, they know where it is hiding).
Sadly they have been able to think of a safer way to go about it.