Starting Raltegravir

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jimbob,
there are several things that currently are unknown, what dose is one thing. How long does it take to eliminate XMRV is another one. Remember that the drug is focused on preventing replication. We doesnt know how long each virus lives either. I would stick to it as long as it will not make you feel worse. Good luck.
 

Tembo

Australia
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Wow Jimbob - going from 30 to 50 is wonderful for 6wks of treatment! So happy for you. Thanks for posting all the updates - Ive been glued to your thread. Seeing improvement with antivirals gives me hope:)
 

gu3vara

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you have to look at it this way, you increased 20 points over your baseline of 30, meaning an improvement of 66% in a few weeks, that's awesome, hope it doesn't plateau afterward but that alone is enough to improve quality of life by a great deal :)
 
C

Cloud

Guest
It's great to hear of the progress made on these drugs and, I appreciate everyone keeping this thread alive. ART may not be too far off for me, so it's great to see how it's going for the trailblazers
.
I used Ultra Clear Plus for a couple years.....expensive, but good stuff and worth the price.

I'm always intrigued when people talk of "remissions", especially really long ones like 7 years because I have never had any kind of remission in my 17 years sick. I have been on a steady progression until I ended up in a bed bound abyss. Back from that severe level of illness now and hope I never go back. I'll take 80% home bound over 80% bed bound and be grateful for it.
 

Daffodil

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cloud me2...no remissions here. jimbob.....so happy for your improvement. remember..this virus has been replicating in you for decades...it can't be that quick a process to reverse!

love
sue
 

jimbob

ME/CFS84-XMRV+
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Been away for a few days, so I need to update a little. Had 5 weeks feeling considerably better on Ral and then the sh_t hit the fan! I felt horrible for 8 days and finally had to stop it. Think I will start it again any day now, because I really miss those 5 weeks. The mono therapy remarks and this IRIS thing still bother me though, but after being sick this long, I feel I need to give it another shot.
 

BEG

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jimbob,

Sorry for that rough patch you went through. How are you feeling now? Don't leave us hanging so long . . . we do begin to wonder about you.
 

Rrrr

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hi jim,

thanks for the update. why not try one of the other two antiretrovirals, too? azt is cheap, right?

rrrr
 

ukxmrv

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Oh Jimbob, so sorry to hear that the good effects didn't last. 5 weeks is pretty good (for me) on having an improvement with an drug so I'm still hopeful. Just wished that it hadn't ended in 8 days of horribleness for you.

XMRV+

(sorry about the earlier typo, just typical for me)
 
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Glad I dropped in this post. I am currently educating my doc about possible anti-retroviral treatments. FOr now, she is getting up to speed with XMRV and potential treatments. She has been treating HIV patients for 20 years or so, and she actually ddn't recoil as much as I thought she might when I approached her on it. I am going to shoot for trying a reguiment in another 4-6 months. I want to make sure that whatever we try, it has less risk than possible other regiments.

Thanks for keeping us updated jimbob!
 
C

Cloud

Guest
Been away for a few days, so I need to update a little. Had 5 weeks feeling considerably better on Ral and then the sh_t hit the fan! I felt horrible for 8 days and finally had to stop it. Think I will start it again any day now, because I really miss those 5 weeks. The mono therapy remarks and this IRIS thing still bother me though, but after being sick this long, I feel I need to give it another shot.
Sorry to hear of these changes. Even though we have been through this so many times, for so many years, it's still a let down to have a glitch like that happen. I would give it another go too jimbob. Like you, I'm interested in the mono-therapy with Ral because I doubt I could handle combo with other drugs. Yea, yea, there is the whole resistance issue, but what little I know about xmrv, it's not gonna mutate too easily. Anyhow, thanks for sharing your venture. I hope your next run at it goes much better.
 

leaves

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Hey Jimbob,

So sorry to hear you are having a rough time with the ral. I think you are very courageous to try this. I tested xmrv + in January and am getting increasingly annoyed with all the waiting. I expected clinical trials, but nothing yet... I have decided that if I cannot participate in any clinical trials, and people report progress on the antiretrovirals, that I will start taking antiretrovirals in December. Then one year has past.
Wishing you strength and health.
 

hensue

Senior Member
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What Leaves said Jimbob!

I have heard nothing about any clincal trials. Will start to investigate taking the retrovirals by end of year. Leaves is right one year has past. Some of you are so young it breaks my heart!
Take Care
hensue
 

leaves

Senior Member
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Hey Hensue,

Good to see you :) How are you doing now? Found anything to relieve your symptoms?
 

Navid

Senior Member
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Hey Jimbob,

So sorry to hear you are having a rough time with the ral. I think you are very courageous to try this. I tested xmrv + in January and am getting increasingly annoyed with all the waiting. I expected clinical trials, but nothing yet... I have decided that if I cannot participate in any clinical trials, and people report progress on the antiretrovirals, that I will start taking antiretrovirals in December. Then one year has past.
Wishing you strength and health.
me too...it's been a long agonizing wait...so frustrating to not have been given a chance to try anything new against this thing that is RESIDING in my BODY!!!!!!


sue, i am glad to infer that you are doing well. have you been asked to not report to much abt your progress. i thought we would hear more from you. it's ok. you do what you can do, but i had hoped to hear more abt the good, bad and ugly : )

thanks to you pioneers.

i take my hat off to your bravery and your ingenuity in finding a doc to prescribe arv's....which believe me i've been trying since nov!!!!!

warmly, me:D:D:worried::In bed::D
 

Tia

Senior Member
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Hey you guys!

My name is Tia here, and I've been sick since birth. I am now 32 years old and on disability leave. Have fought like hell to be able to study and work because there are SO many things I'd like to do in life but can't because of the ME. I'd like to travel and go dancing and start swimming and such but being tired all the time stops me. I feel so alone in this condition, I don't know anyone with it in this country, so this forum with you guys, sitting here and reading about your troubles with ME, that we are all in the same boat toghether, is a huge comfort to me and I'm so grateful for it. Just the thought of that there are more like me out there is a big comfort.

What I'd like to know is if there are anymore like me, who were born with this condition? I've been extremely tired since birth, (the doctors thought I was stillborn at first since they slapped me on the behind but couldn't make me scream, I just fell asleep although they held me upside down) and no doctor have been able to figure out what was wrong with me until a friend of mine showed me Chronic Fatigue Syndrom. At first I thought it was to be just another thing that didn't fit in the decription of how I felt, but I read it anyway and was stunned as I read along, everything matched! So I told my doctor and got the diagnosis. Then I heard about the XMRV and a possible cure.. That the WPI is working on translating a cancermedication for us that will be out on the market in a couple of years.. That sounds GREAT! I can only imagine what it feels like to be healthy and rid of this obsticle.

Since I was born with ME I don't know what it's like to be healthy and I wonder what it must be like for all of you who have been healthy and then suddenly got sick. It must be hell! You're all in my prayers.

Anyway that was my presentation, just wanted to introduce myself and I hope all of us can see the light in the end of the tunnel SOON!

And to Jimbob: There is a cure coming that they're working on, so in moment of despair remember that it's on the way. Might help alittle.