Antiretroviral Trial

[Daffodil]

exercise? i am bedridden and in agony 24/7. i am so bad that the only way i get through the day is by planning my suicide. thats why i am taking these drugs. i am desperate.

 

[heapsreal]

shes trying these drugs because she done everything else. prior to this she was going to go overseas to somewhere, where it was legal to assist suicide to end her suffering of this crappy illness. antiretrovirals have given her some hope. i dont know her situation fully but she could be close to death from cfs/me anyway, people have died from this illness and we dont know but maybe these drugs are keeping her alive. these awful symptoms shes having were prior to arv's. The original quote also states, to treat something we probably have like natural killer cell function, now thats correct but theres alot of studies coming out now saying cfsers have a retrovirus, so she is treating something we know we might have.

read into it more, this poor woman is trying this toxic stuff out of desperation because the medical system in the past didnt really give a crap about her. I applaude her for trying to get better and not just sitting in the corner feeling sorry for herself, shes working with a doctor and trying to stay positive as she can in her gloomy world. Im sure alot of us may not be a sick a sue is but crikey! we should all have some sort of idea what shes going through and we all know what its like to be scoofed at. its nice to get some empathy from people who should understand.

 

[Daffodil]

thanks heaps..i appreciate the post. if it was 5 yrs ago i probably would not be taking these meds. even if any new thing i try doesnt work, it gives me hope for a while so i keep hanging on.

sue
xoxo

 

[leaves]

We get it Sue
XoxoXo

 

[heapsreal]

sue, i think u will get there one day. on the home page here where it talks about a womans treatment she is recieving from dr patterson sounds promising. hopefully when this retrovirus is proven, the experience of dr patterson and his treatments filter through to the other cfs docs around the world, i would luv to try the immunoglobulins, i think this is what our immune stystems need, a dam big boost.

cheers!!!!
inspirational song for u sue, i find listening to this helps keep me going.
http://www.youtube.com/watch?v=QudbMsi1kds&feature=related

 

[shannah]

I agree here. this is the EXACT reason why I don't want to take any antiviralmedication until the cure is out, wanna save my liver and kidneys from extra work and therefore exercise and eat as healthy as I can, so I'm saving and helping my body as much as I can for the big cure.

It's really great that you have the luxury of making this decision and waiting at this point. Some here don't.

Heapsreal hit many of the issues right squarely on the head.

 

[Daffodil]

maybe tia is right. i was getting better a few months ago then began a steep decline. maybe something i have became resistant and now im screwed. i wake up sicker than the day before. its really bad.

but i did what i felt i had to do at the time. i was dying then, too.

i have no idea what to do. i know this isnt any sort of "IRIS" syndrome. whatever i have is spreading. this is going to end very badly.

 

[grant107]

Daffodil, I, too, am so desperate I am going to take antiretrovirals. I am only going to take Isentress and tenofovir because AZT can be so toxic. I have read about some HIV patients are taking antiretrovirals and they just don't work so they are switched to other drugs. It may not be known why they don't work. If I don't see improvement in my energy level in a couple of months I am going to assume these drugs are not working for me.
Jean

 

[Rrrr]

sue,

do you want to tell us where you live, in case any one on this forum can go visit you and help out in any way? it is so hard to be a PWC and try to help other PWCs (i have tried many times), but maybe you are in an area where someone is relatively able to function and she/he can go to yr home and help out in some way, or drive you some where if needed, or do a pharmacy run or or or or ????

i am very worried for you. does yr doctor (who is out of town for 2 wks) have someone else on-call? or did yr doc leave an emergency ph number?

the fact that you are getting sicker by the day is worrisome. i don't know if going off the meds for a bit might be a wise thing to do. what do you think?

xxoo
rrrr

 

[redo]

Can you clear some space in your inbox Daffodil? This pop up when I try to write to you:
Daffodil has exceeded their stored private messages quota and cannot accept further messages until they clear some space.

EDIT: I'll just post the PM here:

I am wondering if you still have insomnia or restless legs feeling?

If you do, the there's a change it could be from a IRIS reaction to the drugs (not saying it is, but saying it's possible). I'd really recommend trying this:
http://en.wikipedia.org/wiki/Ibuprofen
It costs only a few dollars, it's not dangerous, and it's ment to alleviate inflammation (as I see it, it's the inflammation in the
Immune reconstitution inflammatory syndrome which is causing it to give so many new symptoms). If it helps on sleep and restlessness I guess you're on to something.

 

[Daffodil]

thanks a lot guys. i am sorry i keep sounding so desperate. its just my nature when it gets this bad. i still have my mom here and she takes care of me as much as she can so i am ok but thank you guys. i am hanging on so far.

i am also dripping sweat, today and yesterday, and feeling feverish.

my doc has no covering doc. he doesnt really even see patients..he is an HIV / ID consultant and took me on only has a courtesy i think. i made the mistake of telling him my situation and he wants me off the meds but i havent gotten off yet. i really went to get the VIP testing before i go off them.

if i have to go off the drugs, i dont even know if i can hang on for the next theory.

redo..i dont have restless leg syndrome but someone did suggest aspirin to me. thanks

 

[Cloud]

thanks a lot guys. i am sorry i keep sounding so desperate. its just my nature when it gets this bad. i still have my mom here and she takes care of me as much as she can so i am ok but thank you guys. i am hanging on so far.

i am also dripping sweat, today and yesterday, and feeling feverish.

my doc has no covering doc. he doesnt really even see patients..he is an HIV / ID consultant and took me on only has a courtesy i think. i made the mistake of telling him my situation and he wants me off the meds but i havent gotten off yet. i really went to get the VIP testing before i go off them.

if i have to go off the drugs, i dont even know if i can hang on for the next theory.

redo..i dont have restless leg syndrome but someone did suggest aspirin to me. thanks

Sue, you have probably considered this but.....you may want to make sure the ARV's your taking won't affect your xmrv test results. You may need to be off of them to get an accurate test result. I was on Vistide when I did mine and it still showed up positive....so, just a thought.

I get it too Sue. I am not in the abyss now, but I was there not too long ago and know all about desperation. I'm still amazed that I survived that level of illness for that long. I came back from the abyss Sue. I'm not well....but I'm better. It happens and it will happen for you too in one way or another. I like Rrr's idea of support....I would just add getting phone numbers too.

Hugssss

 

[Daffodil]

thanks a lot, cloud. i never seem to get out of the abyss for more than 1 day or so. i am glad you feel well enough to hang on for more research. it would be nice to call someone but when i am this sick, for some reason, i never feel like talking. typing seems to be ok...somehow, it takes less effort.

i am worried the ARV's will affect even the antibody results but they really shouldnt..i mean the antibodies cannot be that low if i have the virus, since i am still so ill right?

i once read about a man who had a disease like this. no one could figure out what he had but he had a lot of head complaints like me. he eventually hung himself. turns out, on autopsy, they found it was dengue fever!

 

[sphynx on roundabouts]

Hi Daffodil,
I really hope that you can get eht vip test soon so that you can move on with new information that could be so helpful for you.

I've been following your thread and I think the fact that you are desperate shows deep humanity. You are suffering a hell that is rarely if ever given any airsapce and you still fight for better - for freedom from the intensity of your brutal symptoms and hope that help will come soon. I know that to be in this unbearable situation must be an unthinkable nightmare for your Mum and you. I am emerging from a hell of my own and understand what it takes to keep going - to keep the flame alive. I had been following your thread all along but was too sick to type in here for a long time. I'm 100% certain that there are many others like this too and you are helping us by sharing your experience with us. Your honesty brings a sigh of relief that we do not have to expend vital energy on developing amnesia about what we have been through or pretend that all we need to do is slap on an artificial smile of pop-psychology's shiniest positivity and deny our devastating illness.
Considering that you have less than ideal medical backup I think you're doing a great job of keeping it together. If it helps to express how you are feeling then bring it on! Let out some of that desperation!!

I hope the fever will calm down today and give you a bit of a break and I'm glad to hear that for today anyway, you are hanging in there.

 

[Rrrr]

thanks a lot, cloud. i never seem to get out of the abyss for more than 1 day or so. i am glad you feel well enough to hang on for more research. it would be nice to call someone but when i am this sick, for some reason, i never feel like talking. typing seems to be ok...somehow, it takes less effort.

i am worried the ARV's will affect even the antibody results but they really shouldnt..i mean the antibodies cannot be that low if i have the virus, since i am still so ill right?

i once read about a man who had a disease like this. no one could figure out what he had but he had a lot of head complaints like me. he eventually hung himself. turns out, on autopsy, they found it was dengue fever!

sue, did you do the culture for xmrv and the other MLVs yet?

 

[energyoverload]

Daffodil.....

i heard from someone who asked a researcher about indinavir but they said not to take it. i wonder why

.....just to clarify - why do you think they said not to take it - because these researchers err on the side of caution in order to protect patients, or solely because it obviously hasn't yet been tested against the specific strains identified in the Alter Lo paper, so it could possibly be of no use/ineffective against these MLVS? Or is there a big danger from using indinavir? I am slightly confussed as to what the danger is other than the potentially serious side effects :S Please clarify,

Jake

 

[Charles555nc]

Daffodil, I have felt as bad as you, felt psychotic, and also have considered/planned suicide in the course of my disease. I was originally dx'ed with lyme disease so I've tried almost every antibiotic out there. When antibiotics stopped working altogether I had to switch to vitamins, and I tried a large number of them...

I currently take 50mg zinc glucanate, with food, every day, (if I dont take this for a week, I feel like I am dying quickly, and that my joints/spine are breaking down in a matter of days)
800mg malic acid every other day (helps with the massive muscle pain)
1.5mg melatonin every night (better sleep, immune boost)
Just added 100mg selenium every other night (added it because of all the latest research into viruses, seems to be helping me mentally/my nerves in this small quantity)

Please try some of this stuff Daffodil! Its fairly cheap and has kept me alive/wanting to live.

Also I had massive sweats until I tried Famvir for a month, then my sweats reduced by 90-95%. Just something to think about.

Currently, I am trying to find a temp job to save money for ampligen in the next several months.

FORGOT TO ADD THIS: I also take 6drops of lugol's 5% iodine a day. Helps the immune system and the taste can grow on you.

 

[Daffodil]

wow. thank you so much for the wonderful posts. i am too foggy to respond as i would like to but i am thankful to have such wonderful support here. i am sorry to hear that many of you are in the same boat as i am. really feels like its sinking fast lol

Rrrr...i had the culture done for XMRV twice long ago (neg) but i wont order the culture now because i am on the ARV's and also i doubt this virus is in my blood. dr. mikovits told me a few times that for me, it is likely deep in my tissues. i will order the serology when my doc gets back. VIP admin. told me that the serology is more sensitive if you arent on ARV's (weird) so i wonder if i might get a false neg. i will try to see if i can ask dr. lombardi about this.

energyoverload....i wondered all the same things about the indinavir but the only response i got was that taking it wasnt a good idea. a lot of the researchers have stopped answering my emails now.

if you are positive for these viruses, i would still recommend trying ARV's under a doctor's supervision. i dont know why they arent working for me but i think there is a good chance they would work for others. the replication rate isnt as slow as they thought.

its just so weird....i really thought this would be the answer for me. i had all the markers for this infection. do not understand.

i know of 6 people improving so far. not a lot but something. i am probably the only one trying these meds without a positive XMRV/MLV test result!

love
sue

 

[energyoverload]

This is a really informative post, lots of really useful info here. Thanks every1 for contributions!

That's interesting about the serology. I thought they had us believing that the serology (antibody) would be just as accurate to use even with patients on ARVS as once the antibody has been formed it remains in the immune system's memory for a long time. Unlike culture this is not quantitative, therefore ARV's use should not give false negatives, so I believed.... :S Its all very confusing!

 

[Charles555nc]

I do not want to harp about what vitamins I have suggested but if you are deficient in stuff like zinc, healthy iodine, small amounts of selenium, and/or melatonin then it might be harder for people to recover until they have adjusted those deficiencies.

I had trouble in the mornings controlling my thoughts until I readded zinc and melatonin on the preceding night, just one example.

For me, they make such a big difference that I'd dont understand how people cope without them. But often different things, help different people...

P.S. Hair tests for minerals can be as inaccurate as blood tests for minerals.