Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jan 8, 2010.
i tested negative to both.
may begin AZT anyway.
Try and think of this news as good news. If you had tested positive for XMRV, it would have been a life sentence as there is no cure for a retrovirus. Now you still have hope that when they do find what is the cause of your CFS that you will be cured - permanently.
I doubt any responsible doctor will prescribe AZT if you tested negative for XMRV. It isn't going to make you better; chances are it will make you sicker than you already are. I know that isn't what you want to hear, however, that is the reality of it.
I also think it is good news you don't have it. I know you were hoping you can find somthing you can treat.
As knowledgable and resourcefull as you have been so far I really hope you will find a cure soon.
Is there any department in the hospital you can trust enough to check in and see if they can find help for you?
(immunology, infctious deseases, or... - canthey so interdepartement consultaions?
And maybe try to get off the antivirals you are taking - maybe even for a while with a hospital supervision.
I am very much hoping you will have a change for the better soon
Take care Love Ruti
That is, if XMRV is the answer, the tests are still not that accurate. I would wait a few months and re-check if a better test comes out.
You have the strength in you I know. To wait for the antibody test. You will have to get off the antivirals awhile. Are they helping?
I know you are suffering but the prospect of me having tested positive is daunting to say the least.
I hope and pray you do not have it. That tells me you have something they can fix.
You know the test right is not reliable. We have heard this over and over.
I knew you would be devastated to say the least if you were negative. WE need you and I need you!
Hang in there and let us know how you are?
CFS has gotten the worlds attention now is not the time to give up.
Sue my Dad who died of cancer was the only one who called me Sue.
Take care and talk to us.
You could possibly be infected then and then again maybe not. I draw the line at having sex though.
ladybugmandy, I'm not sure how to feel about your results. I'm sure you are conflicted as well. I just want to let you know I am following your journey. I'm not sure what to make of the xmrv conflict. It seems unclear whether or not it is causative, or even a major player in what keeps someone with CFS sick. Anyway, you are on my mind....best wishes.
If I remember right, Klimas said as much as 1/3rd of the tests are not accurate. "And you could not handle a false negative right now."
Don't give up on the testing just yet! as hard as i know it is to wait( which is all we do)Pleae retest when they have a more reliable one that comes out!
And not trying to butt into your private business, but have you Had any iv therapy?? my cousin is way sicker than i am with this Crap,in fact she sounds a lot like you, almost bed ridden, totally wiped out, her ebv, cmv,hhv6, and all that crud is through the roof!
we see the same Fibro/cfs doc, and she went a couple weeks ago & just about begged her to do anything!
she gaven her several things in a iv, includin Gamma Globulin and a lot of other stuff( ill have to find out what) she does them once a week for 3 weeks,then again after 6 weeks
she is feeling a LOT better! up and around a lot more.
so im just wondering if maybe you could talk to your Dr about getting your viral load down, until you know for sure that your NOT xmrv positive.
Just a thought.
thank you all. i am too sick and foggy to type much...i cannot afford IV.
am not doing well at all but hanging in there.
will speak to old NY doc monday as well as (hopefully) dr. lombardi....then make final decision re: AZT.
maybe i should try LDN? dont know
love you guys for caring
[This Message was Edited on 01/08/2010]
Hi Sue - I would definitely look into LDN. From the sounds of it, several people are having a really good response to it. I am now considering this route myself. I know I'll have to do my homework first because my doctor is totally clueless when it comes to CFS. I think there is a Yahoo group so I'm going to check that out. I'll post the link if I find it and the group looks promising.
Sue, many false positives are being registered. The more sensitive antibody test coming soon should prove conclusive. I believe that once they get your blood, they store it so it can be tested again.
As I already recommended for you, I am on a regimen of natural, but potent anti-virals (you still need to get liver tests) that potentially work via inhibiting NF-kappa-B and shifting the redox state. Among them are wormwood and artesunate. Also, as Dr. Klimas mentioned, inosine (much cheaper) or immunovir are potent immunomodulators, and nexavir (another immunomodulator that is a form of a cell signaling factor - via transduction signaling) really helped me in the beginning. A bioavailable form of CoQ10 as an antioxidant (also mentioned by Klimas), sublingual hydroxy B12 (DNA silencer among other things), and hawthorne/magnesium for the heart.
Pay attention to diet and avoid the "five essential food groups " Gluten, dairy, sugar, alcohol, and caffiene. "Your brain is your gut." Colostrum and glutamine would be great.
Lastly, perhaps look into stem cell therapy. Seems to have positive effects on the immune system. I hope you can find a doctor who understands all of this.
Dang... meant false negatives. Clearly my brain is not all "there" yet.
I dont care what anyone says this crap we have is not a killer. You may feeling dying sometime but your not going to.
I can feel great one day. By that I mean I have walked up and down hills at a zoo.
Then not have any pain from that at all.
Majority of time like everyone else. Any exercise kills me the next day or that night.
A lot of it is in our heads. Right now this time of year is not the greatest time to feel great and go outside and feel some rays. We are at our lowest it is after the holidays and the economy sucks.
It is winter we are all cold and concentrating on ourselves too much. I am so sorry for the pain I read on this board today. If I was the Great One I would take it away from all of us.
Right now I feel so fortunate to have all of you and know this is a NEW YEAR with Great things
that are going to happen for us.
I feel it, just like I knew I had xmrv. Say what you want I am a little crazy like that. I get premonitions. Now you know I am certified crazy.
I feel like we have new hope like we have never had before. This is not like other viruses.
This is a retrovirus.
We may be on a cure for cancer today. Or if God's will we could all die tomorrow.
All I know is I am going to live every breath I can. Even it hurts! I feel like there is someone always worse off than I am. We just have to hang tight and kick this crap. I am not a spring chicken but I am not totally not bed bound yet. I may be tomorrow.
Come on people help me!!
[This Message was Edited on 01/09/2010]
Sorry! But remember what people have said about the tests and antibody test. And there is more to CFS research than this. There are still all those gene studies that will throw light, though I don't know how much.
Take Care & well wishes to you
No reason for anxiety just because of a test result. I have almost exclusively negative test results and I am still sick.
He (Running Antelope) is right. Nexavir 2 cc per day was also helpful for me too. However I would not experiment with artesunate unless your doc is experienced in it. Nexavir has been on the market for 5 decades and that makes a huge difference. In addition I have never heard that there was a meaningful difference between immunomodulating agents.
Is there any chance we argued about health care on this forum during this summer (RunningAntelope)? Do not worry, I do not wish return to this issue again. Your name is so familiar to me. If so, I am glad to hear from you again.
[This Message was Edited on 01/10/2010]
Once upon a time there was a girl named Stacey. What a firecracker. She was a 4'11" ball of fire and happiness, optimistic about everything. She was a cheerleader all her high school days, Varisity cheerleader voted in even when she was only a sophamore. Gymnast and team captain her senior year. Different boy to date every day of the week what a life in fact her husband married her because she was always smiling and fully optimistic about everything Life was looked at through rose colored glasses and every cloud had a silver lining.
She married the man of her dreams and he loved her dearly, he is the most honest man of integrity she had ever met, yet the most humble. He loves her and care for her this day, but ppooorrrrr Stacey. She has lost all her sunshine, after five c-sections, an open throttle hysterctomy, a back fusion (she cracked her back in high school, smiled right through it, course she didn't know she broke it she only new she was in forever pain) took care of her youngest son who was born with sever CP for fourteen years and the last two years held him through every illness, spinal menengitis w/three staff infections, IV anti-biotics for 21 days, and in the ICU unit every month for the last two years with pneumonia until his last day when she held him in her arms as they lay on his bed and he gazed in her eyes for the first time ever, his words coming through his eyes telling me, "mommy are you and daddy going to be ok?
It's time for me to go, I need to know you will be ok?" "I looked back into his eyes and smiled and told him "mommy held her in your arms when you came into this world and I will hold you as you go out. Daddy and I will be ok, we will take care of each other." I rolled him over to spoon him and so he could watch his video as it seemed there was nothing left to say. Not a second later I felt him slip away.
I somehow thought that was the worst day of my life, and thought surely things would get better physically for me as I was already suffering with the awakening pains of FM/CFS. I guess I was wrong and I guess in this life time one person is only alotted so many days of happiness and joy, I guess I overspent but I'm sure paying the price now. Every day spent in bed is another day of penance for something I'm not sure about.
Perhaps it's the pain I asked for when I begged my Father in Heave to give me Chase's pain, that I would suffer it, just don't let him hurt anymore.
Perhaps it's all the times I said I was sorry for inflicting my sins and sorrows upon the Lord and I would take them back and suffer them myself if it would save Him just that much less to bare.
Perhaps it's a blessing in disguise and now I have all this time to learn more about my Savior so when the time comes I will more prepared to go home and teach others about Him.
Maybe there is a little nip of optimism left after all.
thanks everyone. too foggy to respond but thank you.
will talk to doc today and ask about low dose naltrexone. maybe AZT is irresponsible. something worse has been happening in my body lately so i am panicking.
bdt..i paid out of pocket for the test.
Losing a child, I lost one only early in life lived two days. Nothing like you have gone through.
My brother lost his child at 16 only child and finally after 12 years he will say his name sometime.
No one and I mean no one should have to go through that. I was just the aunt and think about my nephew everyday.
I woke up this morning and your message was the first one I read for some reason.
I know you do not want my pity. You have my empathy I could not imagine the pain you go through everyday.
People say it will get better how??
I know we are given trials and tribulations through our life for a reason. I am so sorry that happen to you and your husband. your son asking you if you were going to be all right?
I started my Monday crying but I promise you life has to get better for you.
You do have optimism! I saw this morning someone worse off than me.
But to lose a child there are no words I can say but a prayer stacey. I appreciate you sharing that with us. The pain has to be beyond comprehensible.
You are on this board and maybe everyone else knew this but I did not.
Dear if you have an ounce of optimsim your go for it. You put my whole life in perspective when you shared that with me.
My Mom use to say as she was sick with cancer and my Dad. This is the order of life you are suppose to die before your kids and Grandkids. She was so wise and could always comfort you no matter what.
nah. stacey this is your year to get better and I am praying for you.
i have a couple of questions about naltrexone....was wondering if someone out there might know.
my NYC doctor said he could mail it to me from NYC (he deals with a compounding pharmacy there). i decided that since i am so ill and the compounding pharmacies here are so far, i will let him send it to me...can it be sent by mail or would the temperature changes harm the drug?
is it taken orally?
the doc said he wouldnt prescribe AZT to me. i am surprised. now i have no way of getting an antiretroviral unless i test positive to XMRV (in which case a local doc has agreed to help). the NYC doc said he has no experience with the drug and it is toxic.
i emailed klimas, who said that azt "is not her favorite drug" and that i should be patient.
i feel like i have an alien in my head and neck trying to get out. i think IV cidofivir would help - i know it would - but i cannot afford it. i suspect HHV6 is a big factor for me.
i will have to make do with naltrexone until the antibody test is available. i have to eventually show exposure to XMRV or i am toast.
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