Neuroencephalopathy and the JC Virus

[Maji]

A little over a year after having had a liver transplant, I have developed a neurological condition brought on by Cyclosporine and immunosuppresants. The JC Virus is resident from birth in most people. Ironically, this virus can be reactivated by these drugs, and it is fatal. Four to five months life expectancy from the point of diagnosis. I noticed a very old post in these forums from a lady whose husband had passed "peacefully" from the disease. This is my biggest fear. The thought of losing my clarity, cognizance, ability to move around is terrifying. My husband and I have always enjoyed intellectual discussions and sparring with one another with words. I NEED to talk with somebody who can tell me what kind of death I have ahead of me. The doctors are entirely too meek about this, and I need some straight talk. Does anybody in this forum have information that can help me? I appreciate any input you are filling to share. Thanks, Maji

[Marlene]

Maji,

I am so sorry to hear about your situation. I know very little about this virus. I know it's been linked to some MS drugs. You may want to search some MS forums.

I did see this on Wikipedia regarding some success treating it. You may already be aware of this though.


FROM WIKIPEDIA:
"In June 2010, the first case report appeared of a PML patient being successfully treated with mefloquine. Mefloquine is an antimalarial drug that can also act against the JC virus. Administration of mefloquine seemed to eliminate the virus from the patient's body and prevented further neurological deterioration.[16]
On November 30, 2010, Cytheris announced that they had eradicated the JC virus from a PML patient, using their human interleukin-7 investigational drug (CYT107) combined with Chimerix's investigational, orally-available lipid conjugate prodrug of Cidofovir (CMX001).[17]"

[Neil Cuadra]

I assume you are referring to JCV leading to progressive multifocal leukoencephalopathy (PML). Some patients have been treated effectively with highly active antiretroviral therapy (HAART). Here is a fairly recent article about it, in the context of HIV.

Our brains are our most important organs so I understand your fear of an intellectual decline. I think you would do well to seek out an expert on the disease for a second opinion.

[Maji]

These treatments look promising, but they rely on immune Reconstitution. Also, it appears they are specifically aimed at HIV patients. I have Primary Biliary Cirrhosis, thus necessitating a new liver. If my immune system were made strong, the body would evict the new liver, which is kind of at cross purposes with remaining alive. I'm 62, have had a long, difficult, and painful recovery from my liver transplant. Two rejection episodes with an immune system reboot, followed by an entirely new immune suppressant regimen, and I am just plain fed up with trying this approach and then that approach, none of which are improving my quality of life. I'm not searching for "treatments", not interested in "fighting this thing", so much as I'm looking for input from somebody who has experienced it, or been with somebody who has. I want to know how I'm going to die. I abhor pain, and am DONE with it. I seek the coward's way out, lots of sedation and comfort and soft words and Indian music and incense, and my sweet hubby feeding me grapes as I sit in Yogi pose, drifting off into the astral. From what I've read, I'll be a drooling maniac by then, unaware of my friends and family, and unable to still myself enough to drift anywhere. I insist on good drugs.
Anyone got any ideas?
Om Shanti
MajiAnanda