Tristen
Senior Member
- Messages
- 638
- Location
- Northern Ca. USA
Hi Ema,
I did my first Cidofovir infusion and it went really well. I had no side effects at all. Scares me to say that, prob start tonight. Does it get worse as you proceed w more infusions? What I understand from the nurses at Beaumont is including myself there are now 6 patients of Lerner's doing this.
I believe you and I are the only ones who travel, others are local. Lerner keeps saying he is getting great results but I wish I knew who these people could be. I would be happy to talk to anybody about this and wish they would say the same about these mystery patients; aside frm urself.
When I asked the nurse how the others are doing/do they tell you they feeling better, she side swiped the question by saying,not that she knows but no one has finished yet with all their infusions. I don't know why Lerner changed his mind about going the Cidofavir route.
It hopefully dawned on him that after my doing the Valcyte for a year in 2007 and getting worse, that I would not do it again or he says the Cidofovir covers multiple Virus, all of which I have and my CMV is so high, aside frm being in my spinal fluid. He said he does not know if it crosses the blood brain barrier (which I feel is necessary to get better), but feels it should.
It upsets me to hear what ur going through now, Lerner has not said to stop the treatment until your other issues get better? He is sure it is not caused by the Cidofavir?
Please get better, I am pulling for the both of us.
I had no side effects at all while on Vistide. Just began to slowly feel better around month 3 to month 9, continued on for a full year because I had been severe for so long and maybe to ensure we put the bugs down. I went from being mostly bedbound severe and having to be driven to those early appointments, and helped into the clinic, to driving myself after 3 months. I was on it a full year and made approx 60-70% improvement, which I'm very grateful for. I had tested very high viral load of CMV with reactivated EBV. Tested negative several times for other herpes including HHV6&7. I now test negative for CMV with the EBV being back in latency. I'm with Dr P who has seen significant improvements with the drug.