My AZT + RAL Trial

[Hope123]

Sue, thank for your updates. I'm glad you're feeling better.

Don't worry too much about not having a quick steady improvement and don't try to compare yourself to others (hard I know). I'd suggest you don't push yourself yet even as you feel better. You've been sick a long time and your body would benefit from the rest as it recovers. It would be a bad thing if the drug truly helped but your progress is slowed or plateaued because of overactivity.

 

[heapsreal]

hi sue, thought u might be interested in this study, basically shows azt reduces ebv replication, interesting??
http://aac.asm.org/cgi/reprint/32/2/265.pdf

 

[ukxmrv]

Sue,

Have you tried any other drugs that have given a similar improvement but have then just of peters out after a while?

Not trying to rain on your parade or anything. Just curious. Most drugs seem to make me worse but I have had a few that have started off well and then stopped.

Any improvement (even short term) is welcome to me as I've not had anything close to a remission ever.

Hope you are still thriving!

 

[Rrrr]

thanks for today's update, ladybugmandy! i sure hope the new type of fatigue and lethargy passes soon. it is so interesting how we can differentiate all these different types of exhaustion, isn't it?

also, if you have the energy, can you tell us if you tend to be one of those CFS patients who is hypersensitive to most meds (as i am)?

warmly
rrrr

 

[Hope123]

Hi, Sue, if you continue to have the sore throat and respiratory issues, call your doc. I know you are aware of immune reconstitution syndrome which sometimes makes opportunistic infections flare up in the course of antiretroviral initiation. In some cases, if there is an infection flare-up your doc might want to treat it.

Those CROI monkey studies didn't concentrate on the brain but they found XMRV in brainstem and not cortex. So I think cognitive issues might be more an issue of inflammation and upregulated cytokines. People with cancer and hepatitis who get immune therapies experience cognitive clouding also.

 

[fairlight]

Hi Sue-I hope you continue to feel better!

I think witchywoman and [name deleted for non-forum member's privacy] are two different people. [name and location deleted for non-forum member's privacy]. Best Wishes!

 

[kurt]

hi all. i am feeling a sort of fatigue and lethargy i havent felt before. perhaps the azt is causing this. it is hard to explain. muscles are sort of achey too. just want to lay down very badly. also feel a little fluish in my throat and lungs. the CFS itself is still better but something is really pulling me down the last 2 days.

Just a thought, but you mention achey muscles, do you live in an area undergoing a season change? In my area (western US) lots of people have 'Spring Colds' right now, including achey muscles, feeling really lousy, just plain low. Perhaps while taking AZT the immune function is altered...so you might not recognize a normal cold at first? Or maybe some normal cold symptoms are worsened.

 

[lostinthedesert]

Hopes and an Internet Caution

Sue,still hoping you have continued healing. To folks on this thread and this board, i feel that speculating on the identity of an individual is bad form. Outing someone who has obvious evil intent is one thing but people choose to remain anonymous for some very valid reasons. Jobs, housing, relationships and more can be effected. Even connecting online identities from different venues can start a damaging chain reaction. The person who gets hurt may not even be who people think they are. Better to contact the person directly and leave the speculation off the threads. I have been hurt by this sort of thing before. Folks may want to consider editing their posts. Peace, S

 

[Rrrr]

sue,

i'm sorry about the depressed feelings. ugh. i wonder if the meds contribute to that. i feel that way on abx.

rrrr

 

[leaves]

Honey hang in there and be kind to yourself.

 

[dancer]

{{{{{HUGS!}}}}} so sorry for all you're grappling with right now. Hoping some little joys will surprise you in the coming days and ease the struggle a bit.

 

[Rrrr]

hi Rrr. i think i still have a long way to go in coming to terms with the fact that i have this forever. i dont seem able to deal with it and forgive myself. i imagine i will need a lot of therapy which is very hard to find here.
sue
xoxo

i get it. i am so sorry. i, too, am dealing with the big fat blues today (and a lot these past few months, er, years, er, decades). have you heard about the phone support group offered by ellie, the virginia cfs leader? you could join that, if you want. i'm not in that group, but i know others who like it. i think the focus is on positive things.

warmly,
R

 

[aquariusgirl]

depression

Sue
even valtrex makes me feel depressed.. It cld be a side effect of the drug.

 

[Hope123]

hi all. i am still the same...about 25% better overall. i tend to feel a little better in the evenings for a few hrs but other times, still at 25%. dont know what to make of that at all.

i also find myself severely depressed and wonder if that might be affecting things.

sue
xoxo

When I first became ill, I felt closer to normal in the evenings. Now I don't have that as much anymore since my illness is worse. My guess is that if your condition is improving, it makes sense that things roll backward and your evenings would be the first to improve. I do know that cytokines also tend to cycle during the day and are generally highest in the mornings so this might account for my evenings being better initially. But as the disease worsened and my immune system became more dysregulated, perhaps the symptoms started to spread so that there wasn't as much of a difference during the day.

I don't know what to make of your symptoms. The brainstem is the most reptilian (oldest) part of our brain and controls basic functions like respiration, blood pressure, etc. People who have a lot of brainstem damage like from a stroke or trauma are usually close to death and very sick. It's not so much a feeling of swelling. They also have altered consciousness (coma in worst cases) and nausea/ vomiting.

 

[Cloud]

Sue,still hoping you have continued healing. To folks on this thread and this board, i feel that speculating on the identity of an individual is bad form. Outing someone who has obvious evil intent is one thing but people choose to remain anonymous for some very valid reasons. Jobs, housing, relationships and more can be effected. Even connecting online identities from different venues can start a damaging chain reaction. The person who gets hurt may not even be who people think they are. Better to contact the person directly and leave the speculation off the threads. I have been hurt by this sort of thing before. Folks may want to consider editing their posts. Peace, S

Thank you!

 

[alphahusky]

Hi Ladybug,

I do also wonder about the depression being a side effect. I always get it during "die off."

Another thing though, you mentioned- perhaps in this thread, haven't read it all- that you were very depressed before treatment? I know there are many times I've gotten all hopeful over a medication (right now, in fact, and I'm dealing with depression myself because it isn't turning out well, plus other stuff), and it leads to a huge emotional let down. Even if it winds up working out, there are always doubts, especially with something somewhat experimental. Being pregnant and having to try a big medication change, even to a drug my PCP considers safer, is really hard for me. I'm thinking being kind of a "lone wolf" on a new medication or something not usually used for that condition can be really isolating in itself. Sometimes I've taken a medication (like now, with Xyrem) when I don't know anyone else who has taken it, and it can add to my feeling of isolation, which is currently acute. There are all the doubts, the wondering if this or that is a side effect and I'll have to give it up, when perhaps the positive effects would have started next week and then I start thinking on that and pretty soon, I'm under a really dark cloud and the walls are closing in.

I think it would be extremely difficult to be in your situation, given there are many even in this forum who have expressed doubts about it (not that I don't understand those doubts or the expression of them; no one wants any one of us to take a drug that gives us some horrible side effect that lasts for life, on top of the disease). I do hope you keep turning to us and any others who can be supportive. I hope I can do that as well- this disease and any and all meds I've taken have been met with such hostility that I've become really phobic of doctors and most other people.

I doubt this post has been "uplifting," but I personally don't always find the whole "have a positive mental attitude" approach to always be helpful (I guess that's why I have this disease, right? :Retro mad. Sometimes it helps me to be around others who just say, "Wow, I have been in this crap as well." And I do know I've found this forum to be a very rich source of accepting that feeling, even if I am the newbie who keeps thinking I've been lurking on this fairly new forum for years (dog years, I say! Dog years! ).

I hope that forward progress continues. I hope you have no negative side effects. I hope your feelings of depression lift.

 

[Rrrr]

ladybug and alpha,

so many of us are right there with you in terms of feeling the blues today (this week, this month, this year, this decade). but let's also remember that this is the most hopeful time in our (my) 20 yr struggle with cfs. finally we are being taken seriously due to this retrovirus. finally there are non-politically motivated doctors and researchers interested in us! finally we have some meds that we know work (with retroviruses: raltegravir and azt). i am saying all this as i'm sitting here feeling so bad, physically and emotionally. but i'm saying it because i'm trying to remind myself of the facts.

also, i got an email from my cfs doc. back during the height of the HIV/AIDS crisis (1980s) he was a young doc in San Francisco. when i emailed him about ladybug and the other PWC doing AZT, and how you are experiecing measurable results (rare in my world!) he wrote back, "I've used AZT alot in the past--not impossible by any means." So if anyone wants to try him as a new doc, in the boston area, he is dr. alex bingham of the visions medical center.

i maybe trying azt before i know it. first, i have to get tested. does anyone know if medicare covers this yet? last month VIP was saying medicare only covered $25 of it, i think.

xxoo
r

 

[natasa778]

I do also wonder about the depression being a side effect. I always get it during "die off."

this could be down to changes in interferon inflammatory pathway, linked to tryptophan/serotonin metabolism. If you google this book should come up Neurochemical markers of degenerative nervous diseases and drug addiction
By G. Ali Qureshi (about second link down), discusses this from page 365 to 380 or so, towards the end talks about AZT raising tryptophan levels in HIV positive, previously low.

If tryptophan levels are being raised but not converted into serotonin properly (due to interferon/IDO interference) depression is one possible outcome. See under 'Function' http://en.wikipedia.org/wiki/Tryptophan

Just a thought, but i wonder if niacinamide would be worth considering or discussing with your doc if this carries on? blogs.myspace.com/georgedhenderson

 

[Rrrr]

the xmrv researcher wrote: "Unfortunately, so little is known about the XMRV virus that I can not give a definite answer, or even a speculative answer at this point. It is possible that XMRV like HIV can have a latent phase, where the virus 'hides out' in long lived cells. If this is the case, finding a way to eradicate XMRV from the body will prove a difficult task. However, XMRV is a Gammaretrovirus, not a lentivirus which means it does not have accessory proteins like HIV. This could mean that cells may have a better chance at 'protecting' themselves from viral infection (see Paprotka T... in Journal of Virology). If XMRV does prove to be a causal factor in either prostate cancer or CFS, i hope we can find a way to eradicate it from the body."

that last line is hopeful, right??

 

[Rrrr]

niacinamide is a type of niacin. i take it instead of niacin. i think it is more available for the body. i get mine at vitacost.com, where i get all my supplements. it is cheap. i get the jarrow brand, i think.