Starting Raltegravir

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
Received my first shipment of Ral today, enough for 3 months with 3 refills to follow. Starting at midnight with first pill. If it does anything, i'll post. Im not able to get on computer as much as i'd like, but i'll make sure to update as much as possible. Here's hoping!
 
Messages
83
Likes
9
Location
Texas
Hi jimbob,

I want to try Raltegravir. Where did you get it? You must have a very cooperative doctor.

Thanks for any information.

vdt
 

omerbasket

Senior Member
Messages
510
Likes
13
Good luck jimbob. I'm not a doctor nor a scientist, but I do want to say to you, that I think you shouldn't expect a quick improvement (it would probably take few months or more), and even if you do have some improvement and it stops it might continue after a few months or more on which you are on the drug.
Also, and although you must be aware of any side effects that you might experience - I do guess that you'll experience some and it might not be easy, it might even be difficult. Again, be aware of the side effects and decide wisely what to do with them, but don't be surprised that there are side effects.
 
Messages
44
Likes
0
Jimbob

Good Luck! The individuals that have tried drugs and posted, seemed to start with AZT and then add Raltegravir. Will you be adding another drug? I hope it goes well for you.
 

garcia

Aristocrat Extraordinaire
Messages
974
Likes
242
Location
UK
Oh to live in the US!

Good luck Jimbob. Will watch your progress closely.

When I spoke to Dr Judy at InvestinME in London on Monday, she was against the use of monotherapy (due to possibility of resistance).
 

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
I just couldn't get myself on board with AZT and all the side effects. Ral a whole lot less scary and we'll see where it goes from here. Thanks for all the encouraging words.
 

mojoey

Senior Member
Messages
1,213
Likes
68
Jimob,

not sure if you read dr jones' blog at treatingxmrv.blogspot.com, but she said raltegravir was the one out of the three that caused the most adverse (but also potentially positive, as she is now reporting) reaction, although she thinks this is possibly due to all the unintegrated viral DNA. For some reason it caused the highest inflammatory response. She thinks it's because it's such a potent inhibitor of XMRV integrase, but who really knows at this point. She did say those that tried raltegravir alone have had the worst response.

I know energetic testing does that resonate with many people, but personally I would not take a drug unless I tested well for it. Out of the threes I tested well for azt and tenofovir, in that order, whereas raltegravir collapsed me. This muscle testng was done before I ever heard from dr jones about her experience with the drugs. Eventually I decided to put off the azt for now and seek another option that I can't post about publically yet (but it has been mentioned as a potential therapy at some XMRV conferences). I just hope you use all the accumulated knowledge at your disposal before doing this. What are common side effects for AIDS patients may not occur for CFS patients and vice versa. Talk with dr jones if you haven't already. If you're willing to take a leap of faith, get some type of autonomic response testing (ART testing, muscle testing, biomeridian testing, other electrodermal testing) to see what type of overall effect the drug has on your body.
 
Messages
25
Likes
0
autonomic response testing?? joey..i tried to google this but imy fog is really bad. how can they determine which drugs will be better for you? do they give you the drug and then test certain things?

thank you
sue
 

redo

Senior Member
Messages
869
Likes
153
Here's a quote from drugs.com about raltegravir:

The rates of discontinuation due to adverse events were 2% in subjects receiving Isentress and 3% in subjects receiving placebo.
Seems like a good drug with regards to side effects.
 

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
redo, I new that going in. one list on side effects showed every drug except Ral with side effects. Still scary though, I've never taken large doses of anything!