Antiretroviral Trial

[RivkaRivka]

sue, a big fat congratulations to you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! glad to have you in the xmrv club!!!!!!!!!

 

[katieann]

well...... I was going to start my ARV trial this month, but we had an um... surprise in my blood work for Co-infections. I tested postiive for Lyme. I had done no less than 3 different tests back in teh 1990's; all negative. Stupid labs. So, I am postiive for Lyme and XMRV; and I also tested positive for antibodies to Bartonella. LOL! unbelievable. Who knows when I had that... coulda been during my childhood, and I am sure it couldnt be active at all anymroe. But it's intestering to wonder where and when I got that, and had no idea.

So, teh ARV trial is on hold while we treat teh Lyme agressively. After that, we'll revisit and start on the ARV's.

It's weird trying to reconcile this. I mean, it's been 15+ years since I started getting ill, and 8 years since I had to leave my career with teh CFS/ME diagnosis. I have to wonder if I would have stood a chance of being not nearly as ill as I have been, if I had been diagnosed correctly. I still think that XMRV is the big trigger imho.

Sorry to bring Lyme into this discussion. I still really want to do the ARV thing, but it has to wait for about 3-6 months.

Sue et. all,

Thank you for your experiences about your ARV pilgramage's! i am staying in touch here, and have you all in my prayers that the ARV's will help you!

~ k

 

[Daffodil]

just stopping in to say i am starting AZT 200 mg BID today. 2 docs said it is reasonable...its a dosage approved in thailand...might be ok for "smaller" people. not happy with progress on just RAL and TDF.

very worried about brain..been reading about HIV cognition problems and how hard they are to treat. "must be treated early and aggressively to minimize neuronal loss". that ships long gone....maybe i'll have to wait for a nanodrug...or maybe, since there is less XMRV in the body than HIV, and there is no Tat protein, things wont get as bad?

just read about XMRV and breast cancer finding....UNREAL!!! breast cancer is taken so seriously, wonder if this will move the drug makers along faster. ila singh has had quite the amazing career and is still young. what a woman!!

 

[Daffodil]

got sleepy and kind of sick after taking the AZT. been foggy. considering asking doc for Actos. consulted with shrink who wants to put me on low dose lithium, since it helped my depression in the past (of course, maybe it was helping the virus infection i didnt know i had!). anyway..i s am thinking of adding 150 - 300 mg lithium. it is supposed to help HIV dimentia too. hoping my heart doesnt act up on this azt.

ugh so tired of this!

if HIV-associated neuro problems are so hard to treat, wont that mean that MLV-associated neuro problems will be even harder to treat, given the fact that MLV's PRIMARY disease association is neurological while HIV's isnt??

 

[Daffodil]

it seems as if, for me, the AZT is the determining factor in the brain fog situation. i have taken 2 doses so far. my brain feels swollen like a balloon! this is what happened the last time. several weeks (or months?) later, i began to experience some wonderful days with significantly less fog.

it is obvious, though, that the AZT makes me ill in other ways. i am sleeping more and have a little more malaise. after i stopped AZT before, i experienced a surge of energy.

i have also started experiencing a little arrhythmia already. i am going to have to begin looking into supplements and perhaps Actos and/or Atenolol. if my resting heart rate goes past 100, as it did on AZT 300 mg BID, then i guess i am in a bit of trouble.

i hope they are looking for XMRV drugs with CNS penetration, cuz thats what i need!

sue

 

[Daffodil]

hi moon. i think lithium has some protective affect on the brain...there were some studies done with HIV. also, i have had somewhat positive results with lithium for depression years ago. i will take a small dose. it is not metabolized by the liver i dont think ... it can affect the kidneys but i have regular blood tests.

as for the actos, dr. deckoff-jones talks about it very positively in her blog so thats where i got the idea.

its my 3rd day back on azt and i feel a bit of a difference already. i am still somewhat swollen but i have been under a lot of stress recently and have not been resting well so i will see in the days to come....

for the moment, i am trying really hard not to focus on the negatives as i usually do. i think i will put up an xmas tree this year, for the first time in many many years....the XMRV news makes me a lot more hopeful than i was this time last year.

happy thanksgiving everyone!

sue
xoox

 

[Daffodil]

hi all. a few days into restarting AZT at lower dose...head still swollen. kind of wish i had never stopped the drug..feels like i will have to go through all the months of crap again to get to the few good days i used to have. something really good was just started to happen when i stopped this drug (well aside from the severe chest pain and pressure lol)

not having as much chest discomfor or arrhythmia this time, but still some.

beginning to think it will be too late for me to recover..have had this so long...feels so deep inside me now. ugh

oh well...here i go again. hope this works at the lower dose. this is the lowest anyone can take!

 

[TheMoonIsBlue]

Hi again Daffodil, I really hope this does work for you. Just try and keep remembering those good "break through days" you had on AZT before. Yes, it could be possible your body will have to go through a period of "adjustment" again since re-starting AZT. But keep your eye on the prize ....those good days. The low dose might not be a problem....you're a woman, and maybe the dose you were on before would be OK for someone larger or, more likely, without the other problems associated with ME/CFS that probably aren't found in HIV patients.
I think the dose of any medication can make such a huge impact on how a patient responds to anything, and the line between a medication being beneficial and giving the patients "toxic like reactions" could be slim. I think Montoya and others are thinking this now with Valcyte dosages.
Have you been able to get your doctor to let you try the atenolol or any Low dose beta blocker for chest discomfort?
I hope you can put up your Christmas tree this year, even if it is a 2 foot tall one......
All the best!

<)Moon(>

 

[Daffodil]

thank you, moon. these pep talks help a lot.

i cannot recall if you are thinking of takiing ARV's yourself...im so foggy!!

sue
xox

 

[redo]

How's your joints Daffodil? Got any joint pain? (before the course, during, or after)

 

[Forebearance]

Congratulations on your positive XMRV test, Sue!
I really hope that taking a smaller dose of the AZT will work for you. It sounds like a great idea.
Personally, I would probably have to take much less than that, and hang the rules.
Best wishes!
Forebearance

 

[Daffodil]

hi all. sometimes when i am really inflammaed, i have a little knee pain..more like an ache. but nothing lately.

still doing poorly...trying to remember when this did help.....maybe the AZT needs to build up in my system all over again.

my heart, although not as bad as before, still feels a little funny. there is some arrhythmia and when i exert myself a little, there is definitely some pressure and pain. i know t cell activation for long periods...and inflammation in general, often results in atherosclerosis. i wont be satisfied till someone gives me an angiogram lol

strange..recovery seems so distant now..like a total impossibility. i feel so broken. but a few months ago, there were days when it seemed close by!

sue
xoxo

 

[heapsreal]

sue,
look into cycloferon, it really does help with inflammation you are talking about and its used in hiv and other viral infections.

cheers!!!

 

[pinkytuscadaro]

Daffodil

I read everyone of the posts on your treatment the other day.
I have had severe CFS since age 23 I am 47 and bed ridden.
I am xmrv+
I had breast cancer age 41 grade 3 stage 2 that is the most aggessive.
My mother and my maternal grandmother passed away in their ealry 40's with breast cancer
My mother had cfs but not to the dagree I have: she could still work around the house and make dinner but always felt weak and tired. She use to say if everyone in the world felt like her, the world would stop going around. Poor mom.

Anyway I wanted to say that I cried, laughed, laughed while I cried (while reading your posts) and couldn't stop reading all of your them regarding your experiences on the antiviral treatment against xmrv.

I could relate to everyone of them!!! I mean everyone!!! Everything you said was of value.
Thank you Daffodil,
Pinky

 

[Daffodil]

awww thank you pinky. love your name by the way LMAO..cant believe u read all those pages! i am very flattered.

im so sorry to hear about you and your family's conditions. what a huge, huge mess this is for everyone.

just wanted to give you guys another update: things SUCK!!!

my head is still as swollen as ever and my heart just doesnt feel right. i am sure i have some CHF going on.

so i know that they are thinking that most of us are co-infected with XMRV + PMLV(?)...and i read on patient advocate's blog that they are still trying to figure out which drugs work against the polytropic ones. the blog says that dr. brewer thinks thats why only a portion of his patients on ARV's are improving...but it was always my understanding that the 3 HIV meds work on both XMRV AND the Lo/Alter viruses....so i dont know whats going on...can anyone shed some light on this? has anyone heard anything??

still have no idea whether its the recent physical exertion, the lower dose AZT, resistant virus, other virus, or WHAT is preventing me from improving but as of now, i am deathly ill. i also have arrhythmia.

why is my heart acting this way on AZT???? my doc said it is very unlikely it could cause cardiac tissue damage this soon.

what if 18 yrs of this crap has ruined my cardiac tissues and no one knows????

i was all set up for a marginally happier xmas this year...but it looks like its gonna be a hellish one yet again.

oh God please let me have just 1 good day as a respite.

-Sue

 

[omerbasket]

but it was always my understanding that the 3 HIV meds work on both XMRV AND the Lo/Alter viruses....so i dont know whats going on...can anyone shed some light on this? has anyone heard anything??

I think you might be wrong here. I don't know of any study that looked into drugs that work against the viruses found in the Lo/Alter study. There are probably studies looking for drugs that work against ploytropic MLVs, as these were known to exist in animals (I think there are probably studies about these), but not about the exact viruses that were found in the Lo/Alter studies - which are only "more closley related to polytropic MLVs".

And I wonder: If there should be XMRV and pMLVs in a person in order for him to be sick - wouldn't it be sufficient to neutralize just one of them? Ofcourse the question is wether the antiretrovirals that work against XMRV in vitro are enough to neutralize it completely in vivo.

 

[Daffodil]

(some researchers think the PMLV's are contaminants)

 

[omerbasket]

(some researchers think the PMLV's are contaminants)

Let them continue to think that... I would still put my trust in Dr. Alter. He might be wrong here - but I think that there are more chances that these "some researchers" are wrong.

 

[Daffodil]

hi all. still doing poorly, head all swollen up.

i tend to agree with omer. why would it be that i wouldnt improve after so long on these drugs if they work against XMRV, considering some did improve?

i think even dr. mikovits believes in the polytropic variants being a problem.

still, these meds should work on all the variants....so i just dont get it.

i heard a rumor that maybe each of us will have to have our individual viruses sequenced genetically or something...to determine best treatment. please let that not be true! i cannot wait for all that to happen

 

[pinkytuscadaro]

Daffodil,
I wonder if you should get off of the treatment you are on and wait to see what the near future brings.
I hate to hear that you are suffering.
How is your heart feeling? Mine hurts a lot too.
I have xmrv and am bed ridden/
I was going to start treatment ASAP when I received the results, thinking I can not take this another day let a lone who knows.
But then I started to read about others experiences and the drugs side effects and thought I better wait at least 6 months to see how others are doing? I have been one to try anything if it sounded half way credible over the 24 years of being sick.
I almost died on valcyte; ended up in the hospital for 4 nights.
I think this XMRV virus is the link but my body is too weakened by all of the years of being sick to go through what you are.
If we see that progress in research is being made that will give us hope.
I am using vitamins herbs, nexavir and some antivirals and am hoping to stay strong enough to get treatment for xmrv when they really know how to treat it.
I also wanted to tell you Daffodil how smart I think you are: I have lost my intelligence since getting sick. I was trained to be a computer programmer and when I got sick at 23 could not think deeply enough to follow a show on t.v. or to balance my check book, this continues to this day at age 47. You may feel that your brain is not what it use to be and it probably isn't but believe me you are still very smart as shown by your posts.
I also wanted to explain that when I last posted that I laughed/cried when reading your posts I did so because I understood you and your posts so completely only because I had been there too
You captured a lot of how I have felt over the years.
I don't want to be a downer to you Daffodil I just want the best for you.
Of course it is your body and your choice and I am here to support your what ever you decide.
Pinky