My AZT + RAL Trial

[Rrrr]

sue,

i hope you don't feel pressure to report to us every day. i fear i instigated that pressure with my last post. just report to us when you want to.

in terms of the rare clarity you felt the other day: i hope more and more of that comes!

warmly,
rrrr

 

[ukxmrv]

Sue,

Why not tell us what you want, when you want to.

This is a hard journey and we are here to support you, not to add to the burden.

 

[Rrrr]

hi ladybug,

if you don't feel up to it, ignore this email. but if you do feel up to it, we'd love to hear how you are doing.

i just got off the phone with dr. coffin, XMRV researcher, and posted his thoughts on a thread dedicated to just that interview. his main point: he would like to see a controlled clinical trial on use of antiretrovirals and cfs. in the meantime, he is interested in how individuals are responding to their own individual treatments. i will send him your thread, and doctor jone's blog.

http://www.forums.aboutmecfs.org/showthread.php?4820-Interviewing-Dr.-Coffin

warmly,
rrrr

 

[Rrrr]

thanks, sue! i'm wishing you the very very best.

do you know any other threads or blogs or anything where folks are discussing publicly their personal trials with antiretrovirals? (in addition to dr jones)

 

[omerbasket]

thanks, sue! i'm wishing you the very very best.

do you know any other threads or blogs or anything where folks are discussing publicly their personal trials with antiretrovirals? (in addition to dr jones)

Hi Rrrr, Sue talked many times about a patient with a nickname "witchywoman". I found a link to a word file that has some graphs about her improvement with AZT. That might interest doctor Coffin:
http://f.nanafiles.co.il//Upload/42010/ForumMessageAttachments/ForumMessageFile_2440489.doc
(You should click the right button when your cursor is on the link, than click "Save Target As...", otherwise you would just see the logo of the website it's stored in).

 

[Rrrr]

hi omerbasket,

yes, i saw that graph, and i was surely impressed. but now no one can find witchy woman, so i personally feel this is not a good avenue yielding good reliable info. we have no idea if she crashed and burned or if she made it all up or or or. i'm not saying she did make it all up, i'm just saying that it seems like less reliable info when we can't interact with the person in the present.

but maybe you are right, i will send the link to coffin... okay. good idea!

warmly
R

 

[omerbasket]

Did you or others here try to send her a private message on patientslikeme.org?
And anyway, I think that even if she vanished (perhaps she feels so well that she doesn't mess with that patinets stuff anymore ) it would be a good idea to send that link to Dr. Coffin.

 

[Rrrr]

Did you or others here try to send her a private message on patientslikeme.org?
And anyway, I think that even if she vanished (perhaps she feels so well that she doesn't mess with that patinets stuff anymore ) it would be a good idea to send that link to Dr. Coffin.

omerbasket, can you private message me and tell me how to access that graph? i can't do it on my mac.

 

[Lily]

I found a number for [name deleted for non-forum member's privacy] in Tucson and one in Phoenix, but I don't want to call her. If you do, I'll PM you the numbers.

 

[Lily]

i almost did this before but i couldn't ..i felt like a stalker lol.

Me too I just did the search on a whim after reading your post.....curious as to how many [name deleted for non-forum member's privacy]might be listed in AZ.

 

[cfs since 1998]

the best thing to do is to ask someone who is seeing dr. klimas to demand that she tell us about what happened to the 8 patients of hers who were on antiretrovirals and were "much improved". she never answers emails about this and dr. mikovits says she doesnt know about dr. klimas' patients.

it's being kept very hush hush and those 8 patients were being examined by a drug company according to an old ABC news article i read.

Do you know how long ago this happened? Was it before the XMRV study came out?

 

[cfs since 1998]

cfs......it was after. this is the article:
http://abcnews.go.com/print?id=8950867

Thanks. I can't help but think something is not quite right here. The article was published October 30. So in 22 days they rounded up these patients, gave them these drugs, and they "much, much improved" all within that short time span?

 

[leaves]

Im a patient of dr Klimas and xmrv + and at this point she is definetely not recommending antiretrovirals.

 

[gracenote]

This doesn't appear to be saying that the antiretrovirals were started in response to the Science study. Was this a trial years ago just to see if they might work? There is no information as to when this might have occurred.

But at about the same time in the 1990s, University of Miami researcher Dr. Nancy Klimas pioneered lymph node extraction therapies for what was then called chronic immune activation syndrome.

Now, drug companies are taking an interest in her work treating eight patients with reverse transcriptase inhibitors, antiretroviral drugs similar to those used today in HIV/AIDS patients.

"They went from very ill to much, much improved," said Klimas, who now directs the Gulf War Illness and Chronic Fatigue Syndrome Clinic at the Miami Veterans Affairs Medical Center.

 

[fairlight]

lostinthedeseert

 

[Martlet]

Moderator note: I had to edit a handful of posts because they contained the real name and possible location of a member of another forum. This could open the individual up to stalking or other unsavoury issues so a quick reminder never to post another's personal information without their permission.

 

[Advocate]

Hi Ladybug Mandy,

I just want to make sure you see this AP story that's in today's news.

The NIH is apparently so unconcerned about the side effects of tenofovir that they are recruiting 5,000 healthy (HIV-negative) women in sub-Saharan Africa to take a tenofovir pill every day.

While awaiting his results in July, the U.S. National Institutes of Health is funding the next step: Researchers now are recruiting up to 5,000 healthy women in several African countries to use either vaginal tenofovir gel daily rather than timed around intercourse or daily pills containing the drug. It's the first comparison of the two strategies.

Advocate

 

[rebecca1995]

Healthy women are being treated with tenofovir? Interesting. That implies that the risks aren't as great as we've been led to believe.

It reminds me of when I was worried about going on long-term antibiotics to treat Lyme and other tick-borne infections. I decided to ask a doctor friend of mine what she thought. Our convo went like this:

Her: What antibiotics would you be taking?
Me: Doxycycline is one.
Her: Oh, I'm on doxy right now for acne.
Me: You ARE? You're not worried about side effects?
Her: Not really. Sometimes I get a yeast infection.

At the time, I concluded that focusing on the risks of antibiotic treatment downplayed the seriousness of my illness, if even doctors were taking the drugs for cosmetic reasons. But after years of aggressive therapy (admittedly, sometimes at 20 x the normal dose) my health ended up worse than before I started.

So I'm not sure what the moral of the story is. You're brave, Sue...good luck with your decisions as you move forward.

 

[Kati]

feeling very discouraged these days. lack of positive evidence for this treatment. even dr. mikovits is sick of my emails.

so tired of living with this swollen head.

to be fair Dr Judy has answered somewhere that she is receiving hundreds if not thousands of e-mails every day, and this impedes in doing her daily work of uncovering the mysteries of XMRV. If I were you I would count myself very lucky that she answered some of your e-mails personally, and wait for papers and new info to come out publicly just like the thousands of us.

That said, I know what swollen head feels like and it sucks.

 

[omerbasket]

Just give it time, Sue. I think we have no way to know before we give it enough time - and I think that you are still very early on that treatment.