Antiretroviral Trial

[Daffodil]

hi mala. its sunny most days but i am too sick to venture outside. to be frank, i really just want to die. i hate pretending i am hopeful and happy. i am not. i dont know how others on this board seem so happy about every news that comes out. i just dont see any hope for me anymore. there is too much damage to my body.

i am sorry. i know i shouldnt post this and there is nothing anyone can do for me, but i just want to send the money i was supposed to send to Dignitas and just go. this is too much.

 

[Mala]

Hi Daffodil. I do not think there is any permanent damage to your body. It will heal. In my illness I have been really down two times. I thought that I could do without supplements but I lost control and felt really really ill. With the right supplements it has turned around. I'm not cured but I manage to survive for now. Go and sit by an open window and let the sun shine on you. Just do it. Sit there for an hour. It's free. Then have some rest and return for the window after a few hours. I take vitamin D potassium and magnesium. I'm not sayin thoose will do it for you. I also know that sometimes the wrong supplements can do ill to. But I do know that sunshine has never hurt anyone in this respect.

 

[gu3vara]

Don't ever say there is too much damage in your body, you just don't know. The body has an amazing capacity to heal itself given the right ingredients and environment.

I couldn't walk 50 meters two months and a half ago and was truly desperate too that I couldn't be helped at this point. Couldn't even tolerate the light of day most of the time. Energy healing helped me in a way I would never have believed. I can go to the store most of the time now, walk for 15 minutes, my mood is great etc... I think I'm on my way to health again finally, but it's too soon to tell for sure. I think I am going through IRIS since 3 weeks...first I had the flu with fever and for a week now I have a cold and my kidneys are hurting a bit and I just can't stop going to pee My body is now fighting infections on it's own I believe. For 7 years I haven't had a cold so that's quite exciting for me!

So, I'm sure you will get better through the way that is best for you eventually, I believe that if you really desire something it will happen. We all have so much to learn about ourselves from this experience, it's true for all disease in fact.

 

[Daffodil]

thank you guys. i shouldnt use this thread for talking about my depression..it is just for my ARV experience...but you guys are so supportive that i do it anyway

you are dear friends.

gu3vara i am so glad you are better.

i try so dang hard to not cry...to stop with the `what ifs`and some days it works...but most days i give in to despair. there is just so much to worry about its overwhelming.

i know i have learned a lot from this disease...i definitely have. it just got to be too much suffering at some point.

 

[ukxmrv]

Sue,

Andrea Whittemore was at that interview this week looking much better. This is not the time to give up on a cure. Can well understand that depression though and sympathise as we all want to get better. I've been sick with this stupid disease for over 25 years but I'm not assuming that the effects are permanent.

Seeing Andrea like that gave me more hope. We don't know what the WPI are moving on or have planned. It's hard to keep hold of hope and the depression makes that much more hard.

When I get down I keep remembering what Dr Klimas said about the ups and downs before we get this resolved and she said not to give up hope because of them.

Sending hugs to you.

 

[Mala]

My favourite Football team, Liverpool FC has a sign on their clubmark that says: "you'll never walk alone".

 

[Cort]

People with horrendous cases of AIDS have recovered! It can happen here as well. No permanent damage. Dr. Peterson talked about a patient who couldn't write his name that is now healthy after Vistide and look a Mike Dessin. Keep up your hope!

 

[guest]

Daffodil: The only reason others can be happy about news regarding XMRV and CFS is brain chemistry. If brain chemistry is messed up a person cannot be happy no matter what. Finding the cause for dysregulated brain chemistry is part of the solution.

 

[Daffodil]

thank you guys so much. i am better today and feel bad for worrying everyone. it appears that this thing is going to go up and down.... when its down, i just cannot remember i was ever better.

love
sue
xoxo

 

[jimbob]

Hang in there Sue, you don't want to miss the upcoming fireworks! We've all waited so long, to miss the good stuff would totally suck!

 

[cfs since 1998]

I think that is not entirely accurate. In the study they did find HIV-1 Protease Inhibitors that had some effect against XMRV:

Only at 500 - 1000 times the normal dose. Toxicity eliminates these as potential treatments.

 

[Daffodil]

i am severely ill again today. these are my thoughts:

somone once told me they suspected that the people with the most brain fog and neuro issues have the highest RNase L. in later 2007, mine was almost 2000, with normal being < 50. the LMW RNase L was always through the roof, too. dr. demeirleir said once that this indicated a very high degree of immune dysregulation.

i am thinking that perhaps my case, because it is so old and the immune damage so great, will not respond to treatment. i think my biomarkers will improve but i will still be sick.

dr. deckoff-jones does not have cognitive issues. she has neuropathy i think, and fatigue. so i think the brain fog being so bad might be a sign of too much damage...?

 

[mojoey]

Dr. Jones does not have cognitive issues? That seems like a huge differentiating issue to me

 

[Daffodil]

she said her cognition is intact

 

[cfs since 1998]

i am severely ill again today. these are my thoughts:

somone once told me they suspected that the people with the most brain fog and neuro issues have the highest RNase L. in later 2007, mine was almost 2000, with normal being < 50. the LMW RNase L was always through the roof, too. dr. demeirleir said once that this indicated a very high degree of immune dysregulation.

i am thinking that perhaps my case, because it is so old and the immune damage so great, will not respond to treatment. i think my biomarkers will improve but i will still be sick.

dr. deckoff-jones does not have cognitive issues. she has neuropathy i think, and fatigue. so i think the brain fog being so bad might be a sign of too much damage...?

I think immune modulation will be of greater importance to people who have been sick longer. Maybe ART won't work by itself. I'm not willing to believe permanent damage has been done. There are still a lot of reasons to be hopeful.

 

[Daffodil]

i want to reach out to someone right now because the agony is so bad again and i am wondering how long i can take this, but i am unable to talk on the phone or travel to see a therapist so all avenues seem to be closed - again.

i heard dr. mikovits said that she knows of several people now who are having success with antiretrovirals....so why do i feel like a dying vegetable?

its humorous....the switzerland people keep sending me letters because i didnt renew my membership. its always food for thought when one arrives lol

 

[heapsreal]

hi sue, hang in there, things are coming to a head now. When the brain fog and pain are bad does valium or a benzo help, i know it helps me, i use a smaller dose for this then i use for sleep. I think benzo's may help turn down the amount of cytokines produced and help with symptoms to some degree.

cheers!!!

 

[Michael Dessin]

Sue, my Rnase was even worse, really. For people taking Ampligen it can take 6 months to work.

Your added depression can come from viral die off as well from the ARV's.

Your brain function will come back, at least 90%.

 

[Daffodil]

ty guyz. so now i am thinking i have one of the other strains of this MLV-related virus...maybe one of the ones that the Lo/Alter team found. maybe thats why the drugs arent working as well for me.

on dr. deckoff-jones blog, it says she and her daughter are doing very well. they started doing well earlier on. and one lady posted in the comments section that her son is almost cured on the HIV meds after a short while on them.

so i just cant figure out whats going on and i am running out of time. i can feel it.

 

[shannah]

ty guyz. so now i am thinking i have one of the other strains of this MLV-related virus...maybe one of the ones that the Lo/Alter team found. maybe thats why the drugs arent working as well for me.

Will VIP retest you for these new MLV's Sue?