My next steps are clear. I had decided on them before I sent my blood in for testing. I have an appointment on January 5th with an Infectious Diseases specialist. I am going to request to begin treatment with the AIDS drugs that have proven effective against XMRV.
I know the AIDS drugs have some serious side effects. I also know that people with CFS have had a really hard time getting on the drugs. It will be a challenge. And yet, I am not wavering.
I've passed the tipping point for me. My quality of life is so negligible that I am willing to try just about anything that offers hope for recovery. I am housebound. I miss out on important events with my family all the time; just yesterday, I was unable to go watch my son tie for 6th place in the school spelling bee. Side effects are not going to interrupt my life, because there just isn't that much to interrupt.
So, what about you? Where is your tipping point? Are you there yet? Would you take the drugs, side effects be damned, if you KNEW you would recover completely? Would you let your kids do it? Or would you wait for science to catch up and offer new, safer treatments?
20 comments:
I have moderate cfs/me and have had it for 7 months. I have been able to keep my job, I am a cook on a private sailing yacht, but if I don't get better even with the most understanding boss in the world, I will lose it. If the antiviral/aids treatments work, then I would give them a go. Definitly. Side effects can be hard to spot in the crazy mix of cfs/me symptoms. Cheers from kiwikchat on twitter. Ps love your blog
I had CFS/ME before I was infected Lyme I believe, and did one weaken me to get the other?...possibly, but I think for me I would want more research studies showing they are a cure...but yet I know that there needs to be courageous people who take the drugs in order to have those studies showing they do or do not work! There are already a few saying they have had improvement, right? It has to be an individual decision and you sound so strong and sure of this for yourself. I really hope you are able to move forward with ease into the treatment! And I hope and pray it is the answer for your health!
You seem to have contracted CFSID around the same time as myself and being a father of 3 (ages 10, 11, & 13) I know and feel your pain after a 4 year search for an answer. I also am X+ and had that feeling of closure when my results finally came in. I settled on an ID doctor who is a frontline CFS doctor in NYC and we spoke in detail of where do we go from here? We decided to attack the co infections (Valcyte), which gave me quite a bit of symptom relief, then let science prove a treatment.
Yeah it may be 2+ years or they may find (doubtful IMO) it's not causing any disease. Finding a medication that proves In vitro is just the beginning and controlled studies need to be completed before I would be willing to try any HIV anti-virals. The people getting results are far from being cured and may be due to drug resistance or a host of other complications. Just way to many questions than answers at this point. Others trying HIV antivirals are making "no" progress which is scary.
Good luck and hang in there you made it this far. Some of the best are looking into this.
I am also X+. I am 54 yrs old and have been ill since I was 38. I started out being bedridden. I have learned to manage this disease through pacing and a wonderful supportive family. I mostly do symptom management now and try to only deal with the worst issue of the day.
That being said I still have crashes so bad that I want to just give up.
At first I was on a quest to get antiretrovirals. I have been unable to find a doc who will prescribe so have settled back into acceptance once again while I wait and see.
I feel very confident that we will have an answer. The only question is when!!
I want to get on with it! I long to test positive and try antiretrovirals, for myself and my children. Nothing can buy back the teen years my kids have lost, or the parenting and professional work I've been unable to do. We have no leisure to wait around for a sluggish process, especially when no funding is being provided to move it forward faster. Tests and re-tests of the existing data are demanded without funding even for those. Time for patient drug trials, NOW!
I'm not quite there, but I'm getting close. I don't have kids but I know my mother will never approve of me taking anything that isn't FDA approved for CFS, even if I have no quality of life and it takes 10 years for approval. So I'm kind of on my own in this. It's hard because I am too sick to work or go to school and I would be so happy if I could go back to school, even just take one class. But on the other hand I am still so young and if something went wrong I have all these years ahead of me to lose, even if they'd all be spent on my couch.
Good luck with your doctor. I hope you have as much luck as the Deckoff-Jonses' did.
Thanks, Kiwi!
Renee -- I've been wondering that about Lyme, too. I just found out that I have mono, and I wonder when I got it. Since CFS, definitely. I've never noticed any symptoms than my CFS ones. I can't help but think if we killed the CFS, we could kill all these tag-alongs.
Anon -- I think if I were managing my symptoms at all, if I had some quality of life, I'd wait it out.
But like Creek said, who knows if funding will continue, and if it doesn't, we come to a screeching halt. And my family has suffered so much not having a functional mom around. Especially the teenagers.
Sue -- you have hit on one of my fears, that no one will prescribe them for me. I'm going to have to keep trying until I can bully one into letting me give it a go.
Alison, it's a hard call. It's such a hard call. And thank you for your good wishes.
I'm on treatment . It's very very rough but it's helping . I'm getting better slowly . These treatments are not to be taken lightly . I hope your I'D doc is a great doctor of HIV and CFS . The two are noT even close to the same but the knowledge gained from 25 years with AIDS epidemic is helping them to help XMRV positive individuals. I know 3 people who have gotten to 75 % again after being dangerously sick.
i too have reached the tpoint - a highly rated infectious disease dr just opened his practice once again to new patient due to a stand on blue shield actions. i've made an appt for after first of the year because i will have nothing left to lose at 59, after losing my last 30 years to cfs. i set up a blog site to begin progress notes and will begin blogging as soon as i have my first appt. i want to be included in any actions by the cfs community, but i also want to die with as much of my faculties present as i can recover.
I reached your point before I was tested and had 5 very good weeks on Raltegravir and then it just stopped working. This was pretty much done on my own, so I think you will do better with inf desease doc helping you. Good Luck Jim P.S. since tested positive for xmrv by serology
Anon -- that is encouraging. I expect it to be a hard road, but I'm willing to give it a go. Good luck, I hope you are able to continue your progress!
Shelley -- Please let me know the name of your blog. I'd love to follow your progress as I share mine.
Jim -- Thank you. I've heard that people have better luck when they try a few of the drugs at a time. It's good to hear that you made some progress; that's encouraging.
I am housebound, and would try it in a heartbeat. I hate my life!!!
I need a doctor in Australia to help me!
Jett -- Australia, now that's a tough one. I'm in the same boat, being housebound. There is so much I miss out on in my family's life.
yes i would try them, but it's also important to realize that there is as of now no cure for retroviruses, just control... possible remission, etc. but yes, after 15 years of me and fibro, narcotics, antileptics, antidepressants, hell, why not! i'd like to get my hhv-6 in control too!
I am going to have to ask my new doctor if he knows about the XMRV test, and if I can get it. I kind of doubt he does though. Still haven't quite found anyone in the medical community in San Diego who is very educated about CFIDS. I am glad you are getting good help Shelli (even tho you don't read my blog!)
Judy
Shelli, I'm so pleased that you have something to work from now! For me the situation is a little different in that I'm at about 60% of my former capacity--can still work part time and manage the occasional family trip and some light gardening, but not much more than that. I'd hesitate to take the drugs b/c I would be afraid of losing that 60% and my independence through the side effects. But in your position, you have so much to gain instead. Best wishes at finding helpful, knowledgeable dr's who can start you on the path to wellness!
Thanks for sharing. It is important that we keep the problems out there in front of everyone. I have Adrenal Fatigue and there are some studies that show that many CFS and Fibro also have Adrenal Fatigue. I am a patient, a sufferer, and an advocate for those who suffer. Recently I recently a book, "All In My Mind?" We understand that many of us have been dismissed by traditional medicine as if it were all in our minds. Keep bloggging.
Jen Busch www.jenbusch.com
I'm one of those who would be much more cautious than most I think.
Primarily because I remember Dr. Cheney stating that there is permanent damage that has been done for those of us who have live with M.E./CFS for decades and that even if a cure was found, all the damage probably would not be able to be undone. Our lives could be improved, he thought, but reversing the illness may not prove to be possible.
Another reason would be my inability to tolerate drugs with many side-affects. I actually had a doctor tell me lately that they were afraid I might be injured unintentionally because of being put on medication with high side-affects and my long list of intolerance.
Anyway, I am totally stoked for you and that you have found the path you want to take. I'm looking forward to hearing how you do on the anti-virals.
Moineau -- I agree, I think you reach a point where the possibilities outweigh the risks.
Judy -- You can get the test from VIP Dx (http://www.vipdx.com/). And, I'm sorry, I thought I had your blog on my blogroll! ;( I fixed the problem, and I'm following you now.
Stacy -- I agree, I would probably wait for the science to catch up if I was still hovering around 50%. I'd say I'm at about 25% on a good day.
Jen -- Being dismissed as crazy (even if they don't actually use that word) adds insult to injury. It's hard enough.
Dominique -- Yes, I can understand how you feel about the risks. I think I'm a pretty good candidate, because I'm not taking any other medications for co-infections or diseases. It was one of my considerations.
I wish you the best of luck on this. I understand totally how the quality of your life is affected so if you can tolerate side affects it is worth a try and hope the Dr will work with you on this.
Was it a complicated ordeal to have the test for XMRV or not..I live 100 miles south of Kansas City and would thing that I would be able to have that test done here and possible sent to a lab in the City?
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