For those of you who have had periods of full remission

[Aerose91]

Or near full....

Did you have any PEM setbacks leading to disease progression from the get-go? Aggressive testing from the beginning seems to be the key to recovery but I have unfortunately had a couple major episodes of PEM which have led to permenant disease progression. From what I have seen some places this may be the death sentence.

Did anyone who went into remission and was able to return to normal life (I mean normal, as in normal person normal) get to remission after having periods of disease progression? Or I'd everyone do aggressive testing from the beginning?

Also, what was your first year like? Did you get better? Worse? Same?

 

[Sushi]

@Aerose91

I had a couple years of remission after disease progression. I had not had aggressive testing before the remission--I was just lucky enough to get a treatment that worked.

I wouldn't say that disease progression means you can't get into remission. I do think we have to talk about remission, not cure, at this point though.

I also can't speak about "first year" since I had a slow onset.

Sushi

 

[Aerose91]

I can agree that remission is more apt than cure, but I also believe that people reach full remission and can stay there the rest of their lives if they take care of themselves.

I'm wondering if getting worse from the onset means that you can't have tho remission or if that's typical, and maybe it takes a while for your body to get everything under control. I've gotten WAY worse since the onset of this- basically to where it feels like a completely different disease. Would liketo hold I to hopes of possible remission

 

[Seven7]

I did have normal Life. But I don't think the Immune system was in best shape, I did not have tests at the time. I could never exercise again in a hard way (run, weights...) that is how and why I relapse every time, I was feeling so well I would go deep into exercise.

As I remember there are certain things I could never do throughout my life: Hard exercise, Sports that demand a lot of physically, sun exposure like sun bathing (felt horrible afterwards), saunas..... So not sure that not been able to do it now is basically my base anyways.

 

[Aerose91]

I did have normal Life. But I don't think the Immune system was in best shape, I did not have tests at the time. I could never exercise again in a hard way (run, weights...) that is how and why I relapse every time, I was feeling so well I would go deep into exercise.

As I remember there are certain things I could never do throughout my life: Hard exercise, Sports that demand a lot of physically, sun exposure like sun bathing (felt horrible afterwards), saunas..... So not sure that not been able to do it now is basically my base anyways.

So you had restrictions to intense exercise and heat etc.. before you ever got sick?

How are you now? Recovered?

 

[Seven7]

I feel much better from being sick perspective, only symptom I have is pain (I just increased the antiviral doses I think that is what is going on) other than that I feel almost like a normal person, when I overdo I feel a little head buzz and fog but other than that all other symptoms are under control (with meds). I also have extreme fatigue.

The one thing that remains the same is my ability to generate energy, so There is only so much I can do before I crash but I do a lot. My current routine: Prepare lunch for kid in morning and drop her in daycare. Go to work sedentary on a recliner(40h/week). I try to take a nap in the car at lunch break or after I come back from work. Do dinner and give kid bath. That is about all I can do. Spend most of the night vertical and dead tired. But compare to others I am very active.

I have some social life and Started doing family trips and more family stuff (limited). I know I am overdoing because I am having more shortness of breath. I have OI on top of CFS.

 

[SOC]

Or near full....

Did you have any PEM setbacks leading to disease progression from the get-go? Aggressive testing from the beginning seems to be the key to recovery but I have unfortunately had a couple major episodes of PEM which have led to permenant disease progression. From what I have seen some places this may be the death sentence.

Did anyone who went into remission and was able to return to normal life (I mean normal, as in normal person normal) get to remission after having periods of disease progression? Or I'd everyone do aggressive testing from the beginning?

Also, what was your first year like? Did you get better? Worse? Same?

My daughter had disease progression for about a year -- from full remission to nearly housebound. Two years of aggressive antiviral treatment put her back into remission. She still takes symptomatic treatments but is fully functional. She has had no PEM in the 2 years since Valcyte treatment ended.

 

[Sushi]

I can agree that remission is more apt than cure, but I also believe that people reach full remission and can stay there the rest of their lives if they take care of themselves.

I'd say that usually you don't stay in remission unless you continue maintenance treatment. That was my mistake. I had some good treatment that put me in remission but I didn't continue with appropriate maintenance treatment to keep the bugs beaten down.

Sushi

 

[Aerose91]

I'd say that usually you don't stay in remission unless you continue maintenance treatment. That was my mistake. I had some good treatment that put me in remission but I didn't continue with appropriate maintenance treatment to keep the bugs beaten down.

Sushi

Makes sense

 

[Aerose91]

My daughter had disease progression for about a year -- from full remission to nearly housebound. Two years of aggressive antiviral treatment put her back into remission. She still takes symptomatic treatments but is fully functional. She has had no PEM in the 2 years since Valcyte treatment ended.

SOC

Your daughter really is an important success story. I'm hoping the valcyte will help me as well. The thought of having remission and feeling reality again is more than I can even comprehend

 

[SOC]

SOC

Your daughter really is an important success story. I'm hoping the valcyte will help me as well. The thought of having remission and feeling reality again is more than I can even comprehend

There's no guarantee, but a neurological infection with HHV6 can cause a lot of cognitive symptoms which can improve a lot with Valcyte. Let's hope it works for you.