First Cidofovir Infusion Done!

[heapsreal]

No, the serum testing didn't show that cortisol was a problem...but I don't know. The panic anxiety etc showed up when I started to be low cortisol 5 or so years ago too. I really wonder if I'm on the edge of adrenal insufficiency still but just not quite bad enough to be showing up on tests. I'm going to do a saliva test soon and see what that says too. It's possible that I just don't make enough cortisol for me and all of my infections too...

I haven't read all of the Lipkin thread, but are you all concerned about the lack of pathogens found? That also makes me worry that I'm trashing my body for nothing...

I dont know what to make of lipkins work when u compare it to say lerner, peterson and klimas etc who treat infections with some success. I dont understand how he cant find it but others can????

 

[Ema]

I dont know what to make of lipkins work when u compare it to say lerner, peterson and klimas etc who treat infections with some success. I dont understand how he cant find it but others can????

I don't understand either. And I've taken way too many meds and supps that didn't help to call the antivirals and antibiotics that did help a placebo.

 

[heapsreal]

I don't understand either. And I've taken way too many meds and supps that didn't help to call the antivirals and antibiotics that did help a placebo.

exactly, if placebo was the answer i would have been cured years ago.
I think this illness is just an ongoing battle, the underlying cause/immune dysfunction is whats letting these infections in, sort of like those zombie films, we keep killing them off but more keep coming, lets hope we dont run out of ammo.

My wish list would be to do the antivirals and abx with ampligen and throw in some xyrem so i can sleep well and growth hormone which the cost also puts it out of my league. Thats what i think would help.

 

[Ema]

exactly, if placebo was the answer i would have been cured years ago.
I think this illness is just an ongoing battle, the underlying cause/immune dysfunction is whats letting these infections in, sort of like those zombie films, we keep killing them off but more keep coming, lets hope we dont run out of ammo.

My wish list would be to do the antivirals and abx with ampligen and throw in some xyrem so i can sleep well and growth hormone which the cost also puts it out of my league. Thats what i think would help.

I would kill to get my hands on some synthetic adenosine deaminase enzyme but at $4000/vial that isn't happening unless I win the lottery.

I have a couple of friends that tried Xyrem for severe insomnia. That is some weird stuff! Neither of them thought it worked well enough to make the side effects worthwhile though one friend still uses it from time to time.

 

[SOC]

I don't understand either. And I've taken way too many meds and supps that didn't help to call the antivirals and antibiotics that did help a placebo.

Exactly!

Dr L gave me no assurance that Valcyte would give me remission. He said something more like, "We'll see what we can do for you." I was not expecting a miracle. I'm not susceptible to placebo effect. I've taken a variety of treatments without much effect, so I wasn't overly optimistic about Valcyte treatment. Nevertheless, I had a huge improvement (not a remission) from Valcyte over the course of 2 years -- bedbound to working part-time. That is not placebo effect.

I don't know why Lipkin is not finding infections yet. He has not given up on the idea of infections in ME/CFS, so I'm not, either. I think we're just going to have to wait and see what the research brings, as hard as it is to be patient.

 

[Ema]

My insurance will never cease to amaze me. I figured it would be a huge battle to get cidofovir, Valtrex AND Valcyte covered but not a peep out of them. $0. It's nuts. They balked at a muscle relaxer last week!

 

[Little Bluestem]

I would kill to get my hands on some synthetic adenosine deaminase enzyme but at $4000/vial that isn't happening unless I win the lottery.

Ivey's a smart dog. Maybe you could train her to 'fetch' you some.

 

[Valentijn]

Ivey's a smart dog. Maybe you could train her to 'fetch' you some.

It'll be like The Doberman Gang!

I loved that movie when I was a kid. I fantasized about doing that with our chubby dachshund

 

[Ema]

If I told her it was food, she'd get it for me in a heartbeat!

 

[Iquitos]

Ivey's a smart dog. Maybe you could train her to 'fetch' you some.

Is this something that veterinarians use? Hmmm?

 

[maryb]

Is this something that veterinarians use? Hmmm?

Ah but even if they did, could Ivey pretend to have ME/CFS? now thats a big ask even for a smart dog.

 

[Ema]

Ah but even if they did, could Ivey pretend to have ME/CFS? now thats a big ask even for a smart dog.

No one is mistaking Ivey for having ME/CFS. She is currently in her kennel after making me chase her barefoot in the cold rain across the neighbor's yard. I guess it was my own fault for letting her out before I had my shoes and coat on. It was really upsetting though. She wasn't listening at all and I got mad and stressed!

 

[maryb]

@Ema
they always do it when we least need it - yeah I know they don't mean to but even so............
hope you're okay now ema - puppies and deaf ears and all that.

 

[Ema]

So first Valcyte down the hatch...wish me luck. I am just about out of enthusiasm for side effects this week (month, year, life).

 

[SOC]

So first Valcyte down the hatch...wish me luck. I am just about out of enthusiasm for side effects this week (month, year, life).

Good luck! You could easily be one of those with no side effects from Valcyte.

 

[heapsreal]

Might be an easy start for you since u have been on other antivirals. This was suppose to have happened to a few i remember reading about in the past??

 

[Ema]

So I woke up this morning on day 3 of Valcyte feeling quite fabulous.

Since there is no way to know how many fleeting moments this will last, I quickly bundled up the puppies and headed off to the park where we romped after sticks in the freezing creek and sniffed all of the spots.

I really needed a break. I just can't believe I actually got a little one.

 

[Sushi]

So I woke up this morning on day 3 of Valcyte feeling quite fabulous.

Since there is no way to know how many fleeting moments this will last, I quickly bundled up the puppies and headed off to the park where we romped after sticks in the freezing creek and sniffed all of the spots.

I really needed a break. I just can't believe I actually got a little one.

Congrats! Did you sniff all of the spots too? Sounds like fun!

Sushi

 

[maryb]

How fabulous for you @Ema - that wonderful feeling of being out in the fresh air and having the energy to enjoy it, and the dogs too, we all miss it, fingers crossed for you

 

[Ema]

Congrats! Did you sniff all of the spots too? Sounds like fun!

Sushi

I supervised the sniffing!