Antiretroviral Trial

[*GG*]

Trust me, u dont really want death. U want for all of this to go away, 2 VERY different things.

But in its time death will come to you, you will only get to experience it once, so dont rush it.

Well put undcvr!

 

[Daffodil]

hi all. sick as a dog. azt is BRUTAL. i cannot even sit up long enough watch a tv show. atenolol had lowered my heart rate to 75 but since yesterday its going up agan! its 85 now.

why are the drugs working for some people??? i swear ..i must have another virus. 2 docs suggested i might have an undiscovered one. ha! i would have had better health if i had been an IV drug user and gotten HIV and Hep C!

WTF. i feel like i am just waiting until i collapse. i want a DNR order.

ugh i still have to order cycloferon...i cannot seem to do anything. i am paying in spades today because i fiinally went to get a paptest yesterday. and i dont have to tell you how much it took out of me to shave my legs....

 

[undcvr]

Get off it if it is not making you feel any better. If it is too much to bear just get off it. Afterall it is just experimental.

 

[pinkytuscadaro]

Hello Daff,
How long have you been sick?
What age were you when you got sick?
What level of sickness are you at or were you at before starting the AV's? I know I must have read this on your forum but I forgot the specifics, I know it has been a long time.
I wonder if those who get well really have what we do?
I wonder if it is easier to get rid of the virus when it is new?
I think I hurt my health on Valcyte; I got an infection from a b12shot while on it that landed me in the hosptial for 4 days.
Ever since my liver enzymes have been abnormal.
I want to get well ASAP too like you.
I just don't know how much more my body or my mind can take.
I am hoping that with the xmrv discovery that a more targeted therapy for us will be developed soon and we won't have to get so sick while on it, just better.
From what I have read the ones that get better on these AV's seem to not have such a hard time of it.
All of this stuff that is attributed to detoxing may just be that our body is getting poisoned and not really getting any better.
I have been through what is suppose to be detox numerous times over the years: chelating mercury,using herbs, AV's....etc , and in realilty I just got sicker when I thought I was detoxing and not better. I kept waiting for the better.
I think indaviduals like you and me are great candidates for the researchers to take on. I just wish that we could both get into a trial where our best interest were at heart and we could get the right treatment in those trials to get well.
Wouldn't that be great We sure deserve that.
I do believe Daff that once we start getting well that our brain function will come back; you already are way ahead of me in that department.
Ubiquinol for your heart is one supplement that I think you should be on. I know it isn't cheap but it is proven to work even prescribed in Japan for heart problems.
It must be so scarey to have your heart feel like you have described. I feel my heart alot but not to that degree.
I take ubiquinol when I do.
Just know that their is someone else out there that is really sick and at their ropes end with this who is fighting this disease with you. That was the comfort that I got from reading all of your posts: I was not in this alone.
Your are one tough sister to keep on these RV's; I am thinking of you Daff.
Wishing you recovery ASAP.
Pinky

 

[illsince1977]

i cannot even sit up long enough watch a tv show. why are the drugs working for some people??? i swear ..i must have another virus. 2 docs suggested i might have an undiscovered one. ha! i would have had better health if i had been an IV drug user and gotten HIV and Hep C!

WTF. i feel like i am just waiting until i collapse. i want a DNR order.

i cannot seem to do anything. i am paying in spades today because i fiinally went to get a paptest yesterday. and i dont have to tell you how much it took out of me to shave my legs....

Daff-

The cardiac reactions to AZT are most distressing. I'm sorry you're having these problems with it. What was your pulse before AZT. Mine is regulary 80.

I can't sit up for even 5 minutes. This has been a constant state of affairs for me for much of the 33 years I've been sick. Keeping clean, brushing my teeth, going to the toilet are monumental tasks. I cannot survive without someone to take care of me - meals, shopping, changing my sheets, laundry, any and all cleaning, getting to any appointments. Please try to keep things in proportion. I am so long overdue for a pap smear it's unbelievable. I can't get my eyes examined because I can't sit up long enough for an eye exam. If my glasses break I will not be able to see because I lack an unexpired prescription and they are not "allowed" to make a pair based on an old prescription.

So while I'm sure you are suffering and your capacities are much diminished since before you got sick, you can "do things." I think it may be the illness affecting your brain and hence your emotions. If that is the fog you refer to, then it does seem to be prominent in your presentation, but you seem to grasp concepts and details fairly well.

I'm probably not phrasing this very well, as I've been sincerely hoping for your recovery all along. I'm also always in favor of people using this community as a sounding board. If we can't share our misery here, where can we? I'm just trying to encourage you to see what's good in your life despite all your misery. "It could be worse" is cold comfort, I know, but sometimes there is little else.

I hope I haven't offended you.

 

[Daffodil]

illsince...no u have not offended me! thank you for pointing that out. i am so sorry you are worse off. that is just...well...awful. i know its the severe fog i have that colors everything. i guess it makes everything unbearable.

do you have fog too?

love
sue

 

[alex3619]

Hi everyone, a source I cant name yet, and might not be able to name for some time, led me to mass post a lot of people the following email:

Hi,

Unpublished data shows a success rate treating XMRV associated CFS with antiretrovirals of about 90%. 40% are in complete remission. The 10% non responders have Lyme disease as a complication. It makes treating XMRV much harder, apparently.

This is unpublished data from outside any formal clinical trial. This data will probably be used to push for clinical trials however.

This could be public in a day or two.

Bye
Alex

PS, not in my emails: Please note that the original source material is now off-line, they may have been asked to keep it quiet until later.

The complete remission figure is wrong: it should be 30%.

 

[Daffodil]

thanks alex. i got this info too on a yahoo group but was later told to remove it because dr. mikovits didnt want it public. wonderful news...but arent there only like 12 people in this sample group?

 

[boomer3]

I thought there was supposed to be a new antibody blood test coming out soon and that a test might be in the process of being developed in Canada too. Has anyone heard when this test will be available?

 

[alex3619]

Hi daffodil, I would say more but if Dr mikovits wants it quiet I think I'll comply. I think its going public however, real soon. We will see. Bye, Alex

 

[Sushi]

These reports are extremely interesting and I'll be eager to read more when it goes "public."

What confuses me is the seemingly conflicting information that Dr. Jamie Deckoff-Jones published in her last blog. We know she is closely associated with WPI and Judy. Can anyone say more? Was she referring to the same patient group?

Thanks,
Sushi

 

[free at last]

These reports are extremely interesting and I'll be eager to read more when it goes "public."

What confuses me is the seemingly conflicting information that Dr. Jamie Deckoff-Jones published in her last blog. We know she is closely associated with WPI and Judy. Can anyone say more? Was she referring to the same patient group?

Thanks,
Sushi

I agree Sushi it sounds odd compared to what Dr deckoff said ? but i guess if the results were that good over a group of xmrv+s then thats the first unnoficial trial ive seen. This is obviously very good and important news, as i was suspecting that ARVs might not be working as well as what was hoped could be due to the low load in the blood. with the tissue being infected more, but the ARVs possibly not reaching it effectively, is a reason i thought so far there has been mixed results. Chimerix 157 being much stronger, and less toxic and apparently able to go deeper into affected tissues than AZT seemed to be a real hope against xmrv. But of course no one is taking it yet as far as im aware ?
This might be a early indication that either xmrv, or as yet some other retro virus is responding to the ARVs treatments, this might add weight to both causative effect of the illness direct or in direct from xmrv. And proving the contamination theorys suspect. Cant wait to see what drugs were used, the level of illness, and improvements, Very exciting Alex Thank you. i recently had a worse crash, it didnt last very long ( some 2 days ) but enough for my partner to wake me up asking if i was ok as i was constantly moaning in my sleep. I was feeling ill before during and after waking, same poisend flu feelings ive always had, and the strongest one for a while. Maybe if i go down hill again. this news reassures me i might have hope. So thanks again for the info, and all the patients trying it. Good luck to them with there continued use. 30% totaly better WOW. I guess more had partial improvements too, im hoping.

 

[Daffodil]

a couple of months ago, i began experiencing itching in my armpits, at a particular spot. it increased and they are now itching A LOT. i have noticed a red patch on both armpits. i read that some people have reported eczema as a symptom of HIV infection..and also a side effect of HIV meds.

the azt has made me so weak now that even lifting up a pair of scissors and cutting something makes me so exhausted i need to lay down. it takes all my energy just to breath. still, it is better than the unbearable brain fog. i still have it, but its a little less. i just feel like i could have a heart attack from lifting up a pitcher of milk.

some people are sending me messages, saying i am scaring them from trying AZT. but PLEASE don't let my experience scare you. i have heard of only 1 other CFS patient stopping the drug because of side effects. most everyone else seems to be tolerating it just fine.

sue

 

[Daffodil]

so since i have an old bipolar dx, i think i am going to talk to my doc and get a rx for valproic acid. if my liver and kidneys can handle it, i would like to add it to my regimen. it lowers proviral loads with HTLV1, so maybe it's worth a shot.

wish i had a chitload of prostratin

 

[Mij]

Sue,

Did you test positive for XMRV?

Mij

 

[maryb]

Sue you can only say what you're experiencing and if it puts people off so be it, better to be prepared for the worst and maybe have a better reaction than you than vice versa. I'm nowhere near the drug stage but just wanted you to know I'm part of the little gang following your treatment. I watch this thread daily and am so willing you on to get some improvement after all your suffering.

 

[Daffodil]

thanks mary. mij..yes i have tested positive. a doctor just told it might be better not to try valproic acid cuz of possible hepatic issues with the HIV drugs.

i keep scouring the internet for MLV researchers but no one emails me back. they probably all made a pact to not answer people anymore lol

 

[citybug]

I just started LDN again and I found an old paper of dr bihari's saying it prevented lipodystrophy in his HIV patients on ARVs, since some people were worried about that, also might help with mood-endorphins.
(I have lipodystrophy just from the me/cfs and eczema now too, and an eye problem and kidney stone and now filling fell out, without any drugs. I started using the hr monitor. A good day for me is in the 80s sitting up (goes 110 across room, 125, 145, 150+ trying to go somewhere, just found free t3 too high, I hope it's that)). Do you know if Conant is in ny?

 

[pinkytuscadaro]

Daff,
I was on valtrex and had to stop due to itching. I then started famvir and started itching again until I could no longer tolerate.
My NP told me that I was allergic and to stop medication.
You may want to check with your doctor as you may be allergic to one of your meds.
Pinky

 

[undcvr]

I just started LDN again and I found an old paper of dr bihari's saying it prevented lipodystrophy in his HIV patients on ARVs, since some people were worried about that, also might help with mood-endorphins.
(I have lipodystrophy just from the me/cfs and eczema now too, and an eye problem and kidney stone and now filling fell out, without any drugs. I started using the hr monitor. A good day for me is in the 80s sitting up (goes 110 across room, 125, 145, 150+ trying to go somewhere, just found free t3 too high, I hope it's that)). Do you know if Conant is in ny?

Citybug is that low dose naltrexone ? What dose were u on on that if you dont mind ?